Discussions By Condition: Nerve conditions

Constant Head pressure and Chest tightness. Please help.

Posted In: Nerve conditions 20 Replies
  • Posted By: pelonis
  • May 9, 2009
  • 08:53 AM

Hi,

I have constant head pressure and chest tightness 24/7/365 atleast for the last 15 years.

I went to Cardiologist, and Gastroenterologist but they were clueless. They conducted tests like 24 hr Holter Monitor test, Upper Endoscopy, Gastric Motility Disorder test, and Abdominal Ultrasound but all the tests were normal. I also used medication for stress/anxiety but it didn't give any relief.

Eating/drinking and exercise worsen the symptoms.

It has been driving me crazy for so many years that I am finally begining to think that it is not worth living any more.

Does anybody experience head pressure and chest tightness together all the time?

Please help.

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20 Replies:

  • I don't know how recently you were tested, but it sounds recent and you now have this outcome and feel discouraged? If not, go get a complete physical and review all this. Inside you, you know whether or not you are stressed and filled with anxiety ... and only you can address it if that is the case. I don't know your living situation or you occupation, or the nature of your relationships or social life ... so I can't say much, however, it does sound like it very well could be depression/stress/anxiety and you simply haven't found the right meds ... or solutions or change of/to the life stressors that leave you feeling so bound. Sometimes, we have to change ... everything, people, places, things, playgrounds, relationships ... or the nature of them, etc. Are there things like this that you are unhappy with and wish you could change? You can. It takes courage, but it can be done ... and in cases such as yours, if this is your situation, must be done. I am one that had to do just that ... in every way!! Best things I ever did for me, and also the hardest!!! How many different medications have you tried? Have you seen a psychiatrist? A psychiatrist would know best what to prescribe. It sometimes takes awhile before you find the right med or combination of meds to reduce the stress/anxiety inside you if this is a chemical imbalance. If there are things in your life that need changing, and that being most of the solution, the meds are very effective in helping one cope during such transitions (they helped me cope as I changed EVERYTHING in my life, about my life, my home, and chose to live the right lifestyle of which I truly believe in). There is no shame in seeing a good psychiatrist, none at all; the stigma is minimal ... especially now that people "you'd never think" are seeking psychiatric help with medications. Life is stressful all over these days, and only getting worse with all the wordly and day-to-day calamities of/for which we all must cope. Besides, why do you have to tell anybody? It's none of their business ... only you would be the one to make it their business by telling them, being that you are an adult with your own rights to privacy. Best of luck to you, let us know how it goes. Many times throughout our lives, the hardest thing to do is the right thing; faith and courage is what gets us through. Through ... not over, under, around, or "swept under the rug" or ignored; THROUGH, and it can be very trying!!!
    neurotransmissing 145 Replies Flag this Response
  • Hi, thank you very much for your response. I recently had complete physical but it was normal. I went to a psychiatrist, used medication for stress/anxiety for almost 8 months. I was also involved with relaxation techniques like Tai Chi, Yoga, meditation. But nothing helped. There is really nothing in my life, in terms of family relations, financial situation, job etc that give me lot of stress. So it is getting difficult for me to accept that stress/anxiety is causing all this.
    pelonis 9 Replies Flag this Response
  • Did you try changing meds (during that almost eight months), or discussing this with the psychiatrist? It may take some changes ... and some time ... to get the right dosage/medication/combination right. Think about it if you haven't ... if it's a chemical imbalance, the balance must be corrected ... the body is very complex, a mild chemical imbalance can throw you off; thinking of this in terms of "chemical imbalance," it may obviously take considerable time, and perhaps even considerable trial and error to get the balance corrected (this is common). This is a very individual thing, everyone is different ... hence, the many medications and combinations available given this "trial and error" situation that is imperative before getting relief. If you don't feel this is the nature of your problem, perhaps see an endocrinologist. Obviously, something is "off" and perhaps it resides elsewhere and and endocrinologist could treat it/you. I would do that anyway, if I truly believed this was not a stress/emotional problem, but bear in mind as well ... it doesn't sound like you really gave the meds a fair shot. They could be right, and you are suffering unnecessarily by not giving it a full and thorough trial and error time, speak openly with the psychiatrist, tell him/her that the medications prescribed aren't helpful; they will always try a different dosage, medication, or combination if you aren't getting what you need. Yes, it can take time.
    neurotransmissing 145 Replies Flag this Response
  • I have your symptoms to a degree but there are other symptoms as well. My symptoms started with sudden swelling and itching. Are there other things going on with your body that you may have passed off as "just one of those things?" I had a spinal tap a year ago while feeling strange head pressure and I had too much spinal fluid that may have been caused by the steroids I had to take, could that or something of that nature be a possibility? I am not suggesting you ask your doctor for a spinal tap (the side effects are horrible) but while I agree that stress and anxiety can cause these things I also know that there can be underlying medical issues as well. Keep a good phsychiatrist but also make sure you trust and like your pcp. Take note of your body, are there other things you may not have noticed? I am hesitant to suggest too much as I sit here homebound waiting for answers myself, I mostly want to say trust what you know of yourself and your body, don't give up. Good Luck!
    Kawendie 12 Replies Flag this Response
  • I have your symptoms to a degree but there are other symptoms as well. My symptoms started with sudden swelling and itching. Are there other things going on with your body that you may have passed off as "just one of those things?" I had a spinal tap a year ago while feeling strange head pressure and I had too much spinal fluid that may have been caused by the steroids I had to take, could that or something of that nature be a possibility? I am not suggesting you ask your doctor for a spinal tap (the side effects are horrible) but while I agree that stress and anxiety can cause these things I also know that there can be underlying medical issues as well. Keep a good phsychiatrist but also make sure you trust and like your pcp. Take note of your body, are there other things you may not have noticed? I am hesitant to suggest too much as I sit here homebound waiting for answers myself, I mostly want to say trust what you know of yourself and your body, don't give up. Good Luck! Hi, thank you for your response. I am going to see neurologist this Monday, hopefully he will come up with some ideas. The stress/anxiety option was thoroughly explored by my PCP but ruled it out finally. Of course, we never know. Did your head pressure improve after spinal tap? I assume it is done by a chiro? For some reason, I feel a bit scared to approach a chiro for such methods. I don't know if it is medically supported or not. Can I discuss it with my neuro? I pray that you also find answers to your questions. If I find anything with my symptoms, I will share them with you.
    pelonis 9 Replies Flag this Response
  • Hi neurotransmissing If you don't feel this is the nature of your problem, perhaps see an endocrinologist. Obviously, something is "off" and perhaps it resides elsewhere and and endocrinologist could treat it/you. What can endocrinologist do? I have had blood work done and it looks like thyroid is functioning well. Pl let me know why you think endocrinologist may help. Thank you.
    pelonis 9 Replies Flag this Response
  • Hi Kawendie I have your symptoms to a degree but there are other symptoms as well. My symptoms started with sudden swelling and itching. Are there other things going on with your body that you may have passed off as "just one of those things?" I had a spinal tap a year ago while feeling strange head pressure and I had too much spinal fluid that may have been caused by the steroids I had to take, could that or something of that nature be a possibility? I am not suggesting you ask your doctor for a spinal tap (the side effects are horrible) but while I agree that stress and anxiety can cause these things I also know that there can be underlying medical issues as well. Keep a good phsychiatrist but also make sure you trust and like your pcp. Take note of your body, are there other things you may not have noticed? I am hesitant to suggest too much as I sit here homebound waiting for answers myself, I mostly want to say trust what you know of yourself and your body, don't give up. Good Luck! I replied to your message before but for some reason it is not showing up. Thank you very much for your response. Did you find any improvement in your head pressure after the spinal tap? I assume it is done by a chiro? Is it a medically supported procedure? Sorry I am asking many questions as I don't have much idea about these tests. I am going to see a neurologist this Monday. Hopefully he will come up with some ideas. I pray that you also find answers to your questions pretty soon. If there are any developments in my case, I will definitely let you know.
    pelonis 9 Replies Flag this Response
  • Hello again, pelonis :) I quoted your post here so my answers will be easier to understand by referencing your concerns: Hi, I have constant head pressure and chest tightness 24/7/365 atleast for the last 15 years. I went to Cardiologist, and Gastroenterologist but they were clueless. They conducted tests like 24 hr Holter Monitor test, Upper Endoscopy, Gastric Motility Disorder test, and Abdominal Ultrasound but all the tests were normal. I also used medication for stress/anxiety but it didn't give any relief. Eating/drinking and exercise worsen the symptoms. It has been driving me crazy for so many years that I am finally begining to think that it is not worth living any more. Does anybody experience head pressure and chest tightness together all the time? Please help. In answer to your question:"What can endocrinologist do? I have had blood work done and it looks like thyroid is functioning well. Pl let me know why you think endocrinologist may help. Thank you." Although you have seen many specialists and have had much blood work done, you have not seen an endocrinologist yet. Each specialist typically does blood work only upon referral from a GP or PCP to look for specific symptoms that are within the spectrum of their specialty. Further, an endocrinologist not only reviews/tests for thyroid problems, but for other organ function to insure everything within the endocrine system is functioning properly. Hence, I made that suggestion since you have been through the mill ... as it appears in your post ... and remain without answers or a definitive diagnosis or proper treatment. An endocriniologist will test for multitudes more than simply thyroid gland function. I am coming back to this thread with a link about the endocrine system for your reference. This may be a very good lead to get diagnosis, or at the very least, rule out a host of other conditions to get things narrowed down. A neurologist may also be of help later. However, if I were in your situation, I would get the organ function and chemical possibilities (potential imbalances due to possible organ malfunction, in turn, possibly releasing or more or less function of something within your body that could result in your symptoms). This is what the endocrinologist would look into. I also mention neurologist, later, if answers are not found with the endocrinologist. I mention this because the CNS (central nervous system, being the brain and spine) govern the entire human body; if "signals and/or transmissions" are off, that would be something the neurologist would look into. I would mention both to your GP or PCP, he/she would know best as to where you should be guided. Perhaps your GP or PCP would feel, in your particular case, that a neurologist would best best to go to first ... I don't know. However, if I were you, I would ask. I will also come back with the CNS/neurological thread for your reference. BRB
    neurotransmissing 145 Replies Flag this Response
  • Hi pelonis, I'm back. Here are the links I said I would supply for your reference: The Endocrine System:http://www.wrongdiagnosis.com/organ/endocrine_system.htm The Central Nervous System:http://en.wikipedia.org/wiki/Central_nervous_system Has you doctor mentioned similar? I see that you posted your original thread here in the Neurological (Nerves) Forum. Anyway ... click around in these links and you'll see how very much these two systems consist of. However, I advise you not to start getting too deep when you see spooky conditions listed and suspect you may have one. Not that you will, but I've seen it time and again; please do not try to self-diagnose or assume you may have something you may see listed (even if you notice matching symptoms). It sounds like your symptoms mirror the milder things, not the apparent worst scenarios that you may come across. There are millions upon millions of conditions and diseases that you may come across, just ignore them and look at what these systems are comprised of and why I make my suggestion. Not to drone on about this, but I've seen people self-diagnose and witnessed them driving themselves into stress (and even obsessing about having something in particular) and it's typical that the diagnosis is far from those of which they drive themselves nuts while obsessing about the possibilities. It is far too soon, especially in your case, to assume anything; it is apparent that much still remains to be checked out until you find your answers ... and I assure you, the majority of those things are minor ... however, may certainly feel like living ***l while you remain untreated! By no means am I trying to minimize your suffering here! Things that are easily treatable are living ***l in some cases; personally, for example, my life was ***l until I finally got diagnosed with Hashimoto's Thyroiditis (a thyroid dysfunction disease, obviously). We had to play with dosages for a bit, but once my thyroid function got leveled out, no problems at all ... perfectly back to where it should be, simply by taking a little thyroid hormone pill daily. Again, I remain of the opinion that you should continue with the psychiatrist and give the meds a fair shot. You obviously do feel stressors in your life at this time ... especially as you go through this mess to get a diagnosis. It could be a long ride, sometimes it is ... unfortunately. The right med and correct dosage is a Godsend, I speak from personal experience on that. And about that, I will tell you; I just started a new med less than a month ago, I feel much, much better and am much more productive ... I went through many, many anti-depressant medications before finding help. At present, I take Cybalta ... finally, I've found something that helps as I go through the medical too; my quality-of-life has changed very much for the better. I hope you will find this to be true in your case as well because prior, I felt exactly the same. Reference this statement, below, in your post; you need support to get through this and to help you cope, from people and also, it appears apparent, from meds: "It has been driving me crazy for so many years that I am finally begining to think that it is not worth living any more." You have my support and I will be thinking of you; I will watch for updates on your thread.
    neurotransmissing 145 Replies Flag this Response
  • If there was relief after the spinal tap I could not tell because I got a spinal headache. Spinal taps are no joke and if a physican agrees you need one please allow a neurologist to it. Have you had any other symptoms? Can you see a naturalpath? They may offer you some relief in the form of remedies that will not harm your body further. If I hear anything I will keep you updated, you do the same.
    Kawendie 12 Replies Flag this Response
  • Hi all, Thank you very much for your support and suggestions. Neurotransmissing, I specially thank you for such detailed response. I went to see neurologist last Monday and he said that my symptoms could be happening because of decreased blood flow to my brain. He asked me to try klonopin .5 mg each night. I have tried it for 5 days and the good news is that my symptoms are almost disappearing. Of course it is still need to be investigated the cause of decreased blood flow to the brain but for time being I have so much relief. I am able to eat normally. I am free from chest tightness and head pressure. Hope this may help anyone out there suffering with the same problem.
    pelonis 9 Replies Flag this Response
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  • Hi pelonis, I'm so happy to hear that you are feeling much better!! :) I'm sure your posts will help, especially given that another suffering from the same, or similar, and also in need ... attain the blessing to come across this thread and find your posts of same/similar sufferings. I, too, take Klonopin .5 (Clonazapam, generic) as well ... two per day; it helps tremendously with the anxiety while going through all the red tape, as you are going through as well; it has also helped my sleep (I take one at bedtime). As you mention, I also have blood flow problems due to my conditions ... of which I remain actively seeking answers to/for the cause(s) and a definitive diagnosis. Strangely, I was started on the Klonopin/Clonazapam due to convulsive epileptic-type seizures, and it's my understanding that seizures of that nature are typically treated much more effectively with other meds ... of which I tried three, but the seizures continued! Finally ... I got this script and the convulsive seizures have ended. Nothing about my case has been "ordinary" ... and much has been very "not" ordinary ... being actual reversals, the meds prescribed for the actual conditions would actually worsen them -- a rebound effect, worse off in some cases!! This has happened several times ... very odd. So my meds are those that are most typically used for other diseases/conditions but also work for mine. So not only are the seizures remedied, my sleep has improved and I'm much less stressed ... I understand Klonopin/Clonazapam aids in some cases, as in mine, to improve overall cognitive function as well. I have been on this med for six years now ... the ONLY ONE that has worked consistently and remained helpful; in addition, I have never needed any increase in dosage all this time. I think I mentioned recently starting the Cymbalta as well; I tried it about seven years ago and got no results or relief at all .... no better, no worse. However, the Cymbalta with the Klonopin/Clonazapam is the ticket for me! I was reluctant to try it again, but I gave it another shot since my M.D. brought the many neurological and chemical changes in my body to my attention as a reminder ... so that I would reconsider. So I decided to give it another try. As is the case with the Klonopin/Clonazapam, the Cymbalta has proven to be a Godsend. Moreso than the changes to my body though, I suspect it is the combination of both that finally "hit the mark" for thorough relief overall. It even seems the pain I suffer from is much improved ... this was noticeable at the end of the first week ... when my dosage went from 30 mg. where I started ... to the 60 mg. Overall, I'm doing considerably better. And MUCH BETTER ABLE to cope, no doubt about that! As for the pain, I am on Morphine (one a day, more as needed up to six; but as mentioned, I am now taking only one since the pain is not nearly as severe most recently ... nor are the headaches ... and the dosage is very low, @ 15 mg. due to ever-changing degrees of pain at any given particular time *sigh*) ... and to help me sleep, I am on Trazadone (for neurological reasons, I can't get a regular sleep/wake cycle in place; this is slowly helping, but I still have those ups and downs) ... and for alertness, brain function alertness, and fatigue (the fatigue due to the disturbed sleep/wake cycles that come and go) I take Adderall XR ... for thyroid function (Hashimoto's Disease), I take Levothyroxine which has been consistently effective for about a decade now ... until recently, three times abnormal, but just last week ... tested normal -- so that, obviously is helping as well ... overall improvement and less daytime fatigue. Of course, my diagnosis still remains to be found ... however, being that this neurological mess and all this "phenomena" began in 1996, I am forever grateful to have finally found more effective medications ... along with absolutely effective ones as well, which is really great! My case, similar ... but considerably also very different as far as the condition(s) resulting in what we do share ... I post my informations just in case you may find these meds offered or considered as a possibility based on the findings in your case. Seems we share similarly, so perhaps this will supply you with some direction should you need meds upon diagnosis and the findings that pertain to you ... in which these others may be an option. Please post updates. Take care! Again, I'm very, very happy for you!! ~ Many Blessings to You ~ :)
    neurotransmissing 145 Replies Flag this Response
  • P.S. !!! VERY IMPORTANT !!! If your neurologist/other provider(s) ever feel that a lumbar puncture (spinal tap) would be a good idea, make sure that this is done by an experienced and properly-trained professional, with this procedure being a main staple within their expertise. I have seen eight neurologists ... as well as the reviews by neurologists there in the same offices, upon two occasions, that they consulted for opinions. Typically, at least in my case, you are sent to another facility where the provider that does this is specialized and very-well educated and experienced, specifically, about the most proper and safest ways to carry out this procedure ... that being within their particular/similar area of relative and similar procedures of such a delicate nature. This can be a very dangerous procedure if not done and carried out properly, expertly, and exactly. Most commonly, the error is a leak of spinal fluid that enters the body ... and you will have the most hellish and excruciatingly painful headache of your life, for which you will have to go to the ER and get a patch done. Truly, you don't want to have that happen, I assure you. And that's the mild part ... the other possibilities could render far worse consequences, and also, potentially permanent ones. To date, I have had three lumbar punctures; in each/every one ... I was sent to the hospital to have this done as an outpatient procedure to be done by those that are specifically trained, experienced, and equipped to do so. Of the eight neurologists I have seen, none of them performed this procedure themselves. However, two of those were neurological brain surgeons ... so I suspect they may be experts along that line. However, I have never encountered the possibility of my neurologists, themselves, performing a lumbar puncture. There are neurologists, and then there are ALSO neurological surgeons ... the neurological surgeons are typically, obviously, also neurologists as well, but a "step-up" ... so to speak ... with the training and expertise to perform surgery. Typically, neurologists do not perform a lumbar puncture (spinal tap) and you are sent elsewhere for that ... as least in my case and based on my many personal experiences. As for the neurological surgeon ... I have no idea; they may do this procedure as well ... however, I suspect they do more of the "more serious" procedures (brain surgery and similar) and leave the lumbar punctures to those available experts to perform ... and to free up their schedules for their most serious and absolute surgically-necessary duties to/for their patients.
    neurotransmissing 145 Replies Flag this Response
  • Hi all, Thank you very much for your support and suggestions. Neurotransmissing, I specially thank you for such detailed response. I went to see neurologist last Monday and he said that my symptoms could be happening because of decreased blood flow to my brain. He asked me to try klonopin .5 mg each night. I have tried it for 5 days and the good news is that my symptoms are almost disappearing. Of course it is still need to be investigated the cause of decreased blood flow to the brain but for time being I have so much relief. I am able to eat normally. I am free from chest tightness and head pressure. Hope this may help anyone out there suffering with the same problem. I am happy you found some relief. I must suffer through all this on little or no medications because all the physicians are afraid to damage my kidney. As far as the spinal tap goes I have to agree with neurotransmissing. While the hospital I go to can do it as an office visit, it is done by a neurologist that knows what he is doing. That did not save me from a spinal headache. Neurotransmissing, did any of your spinal taps show either cloudy fluid (not meningitis) or too much fluid?
    Kawendie 12 Replies Flag this Response
  • Neurotransmissing, did any of your spinal taps show either cloudy fluid (not meningitis) or too much fluid? Hi Kawendie, No, my spinal taps have all been normal ... and Meningitis (along with everything under the sun) have been ruled out. Most recently, I also had yet another CT scan done of the entire spine (and brain) ... whatever this is that I have is limited to my brain function; however, the impacts due to the "short circuiting" or "malfunction" of the brain, in relation to the brain/body functions are very prominent. The lumbar punctures and CT scans of the entire spine were done to continue searching for answers in the fluid (those that may have appeared later, given the new developments) and resulted with the conclusion that the spine and spinal cord are not involved or damaged in any way. Also, because of the physical involvement ... they suspected the spine could very well be a factor; so far, they see nothing to suggest that. Most discouraging! I hope to get some answers soon ... but after all these years and so many things misdiagnosed ... I'm not holding my breath by believing "This time, I'll finally have my answers and get a diagnosis with closure!" Although I do still hope and remain optimistic that this will be the outcome. In your case, I'm wondering if you had a leak as well ... however, minor enough that a return to the ER for a patch was not required? That happens quite often; it happened to me on #2 ... and they called that minor?! It was the headache from ***l, if you ask me ... LOL. I sure feel compassion and sympathy for those that end up with the leaks that require patching! I've heard that this has happened to some and it sure sounds painful! ~ Prayers & Blessings to You, Kawendie ~ I hope you are feeling better, it sounds as though you may be in waiting too? Do you have any answers, or more direction for those answers yet?
    neurotransmissing 145 Replies Flag this Response
  • I am happy you found some relief. I must suffer through all this on little or no medications because all the physicians are afraid to damage my kidney. As far as the spinal tap goes I have to agree with neurotransmissing. While the hospital I go to can do it as an office visit, it is done by a neurologist that knows what he is doing. That did not save me from a spinal headache. Neurotransmissing, did any of your spinal taps show either cloudy fluid (not meningitis) or too much fluid? Kawendie, sorry that you can not try medication. Hopefully some of the methods you are trying give the breakthrough. It won't directly help your medical condition but did you try meditation to give some relief from your headache?
    pelonis 9 Replies Flag this Response
  • Hi Kawendie, No, my spinal taps have all been normal ... and Meningitis (along with everything under the sun) have been ruled out. Most recently, I also had yet another CT scan done of the entire spine (and brain) ... whatever this is that I have is limited to my brain function; however, the impacts due to the "short circuiting" or "malfunction" of the brain, in relation to the brain/body functions are very prominent. The lumbar punctures and CT scans of the entire spine were done to continue searching for answers in the fluid (those that may have appeared later, given the new developments) and resulted with the conclusion that the spine and spinal cord are not involved or damaged in any way. Also, because of the physical involvement ... they suspected the spine could very well be a factor; so far, they see nothing to suggest that. Most discouraging! I hope to get some answers soon ... but after all these years and so many things misdiagnosed ... I'm not holding my breath by believing "This time, I'll finally have my answers and get a diagnosis with closure!" Although I do still hope and remain optimistic that this will be the outcome. In your case, I'm wondering if you had a leak as well ... however, minor enough that a return to the ER for a patch was not required? That happens quite often; it happened to me on #2 ... and they called that minor?! It was the headache from ***l, if you ask me ... LOL. I sure feel compassion and sympathy for those that end up with the leaks that require patching! I've heard that this has happened to some and it sure sounds painful! ~ Prayers & Blessings to You, Kawendie ~ I hope you are feeling better, it sounds as though you may be in waiting too? Do you have any answers, or more direction for those answers yet? Hi, I am sorry you have not gotten further yet. I keep you in my prayers. As for my spinal taps, the first three were all in the same day. One by a resident in the er who could not get any fluid, one by a resident on the floor when I was admitted and the third time they finally decided to call in a specialist. The specialist got a little fluid and it was very cloudy but tested negative for meningitis. During this time my entire spinal cord was also inflamed. I need to tell you that when the spinal tap was done by the neurologist, I also had inflammation in my spinal cord. At this time however the fluid was clear. The best guess is that these are flare up's of aseptic meningitis. And I am still waiting for answers. I have done a little research (on the things I have a diagnosis for.) and it all points to some type of connective tissue disease. Interestingly a rheumatologist metioned this a few years ago but my physician has not seen it as necessary to send me back. Please keep me posted on how you are doing, stay optimistic and continue to challenge your physicians to work hard at finding an answer.
    Kawendie 12 Replies Flag this Response
  • Hi, I am sorry you have not gotten further yet. I keep you in my prayers. As for my spinal taps, the first three were all in the same day. One by a resident in the er who could not get any fluid, one by a resident on the floor when I was admitted and the third time they finally decided to call in a specialist. The specialist got a little fluid and it was very cloudy but tested negative for meningitis. During this time my entire spinal cord was also inflamed. I need to tell you that when the spinal tap was done by the neurologist, I also had inflammation in my spinal cord. At this time however the fluid was clear. The best guess is that these are flare up's of aseptic meningitis. And I am still waiting for answers. I have done a little research (on the things I have a diagnosis for.) and it all points to some type of connective tissue disease. Interestingly a rheumatologist metioned this a few years ago but my physician has not seen it as necessary to send me back. Please keep me posted on how you are doing, stay optimistic and continue to challenge your physicians to work hard at finding an answer. Wow ... what awful experiences you had with your lumbar puncture!! You remain in my prayers too, thank you ... I hope you get an answer soon. I'm optimistic, but a bit worn out by it all ... and realize that in my case ... it could take quite awhile longer. Even if I get a diagnosis, with all that has happened and all that which has already been misdiagnosed throughout the years ... I suspect they will want to confirm their findings, time and again, before making it "official." The new meds are really helping me though.
    neurotransmissing 145 Replies Flag this Response
  • Hi Neurotransmissing, Hi pelonis, I'm so happy to hear that you are feeling much better!! :) I'm sure your posts will help, especially given that another suffering from the same, or similar, and also in need ... attain the blessing to come across this thread and find your posts of same/similar sufferings. I, too, take Klonopin .5 (Clonazapam, generic) as well ... two per day; it helps tremendously with the anxiety while going through all the red tape, as you are going through as well; it has also helped my sleep (I take one at bedtime). As you mention, I also have blood flow problems due to my conditions ... of which I remain actively seeking answers to/for the cause(s) and a definitive diagnosis. Strangely, I was started on the Klonopin/Clonazapam due to convulsive epileptic-type seizures, and it's my understanding that seizures of that nature are typically treated much more effectively with other meds ... of which I tried three, but the seizures continued! Finally ... I got this script and the convulsive seizures have ended. Nothing about my case has been "ordinary" ... and much has been very "not" ordinary ... being actual reversals, the meds prescribed for the actual conditions would actually worsen them -- a rebound effect, worse off in some cases!! This has happened several times ... very odd. So my meds are those that are most typically used for other diseases/conditions but also work for mine. So not only are the seizures remedied, my sleep has improved and I'm much less stressed ... I understand Klonopin/Clonazapam aids in some cases, as in mine, to improve overall cognitive function as well. I have been on this med for six years now ... the ONLY ONE that has worked consistently and remained helpful; in addition, I have never needed any increase in dosage all this time. I think I mentioned recently starting the Cymbalta as well; I tried it about seven years ago and got no results or relief at all .... no better, no worse. However, the Cymbalta with the Klonopin/Clonazapam is the ticket for me! I was reluctant to try it again, but I gave it another shot since my M.D. brought the many neurological and chemical changes in my body to my attention as a reminder ... so that I would reconsider. So I decided to give it another try. As is the case with the Klonopin/Clonazapam, the Cymbalta has proven to be a Godsend. Moreso than the changes to my body though, I suspect it is the combination of both that finally "hit the mark" for thorough relief overall. It even seems the pain I suffer from is much improved ... this was noticeable at the end of the first week ... when my dosage went from 30 mg. where I started ... to the 60 mg. Overall, I'm doing considerably better. And MUCH BETTER ABLE to cope, no doubt about that! As for the pain, I am on Morphine (one a day, more as needed up to six; but as mentioned, I am now taking only one since the pain is not nearly as severe most recently ... nor are the headaches ... and the dosage is very low, @ 15 mg. due to ever-changing degrees of pain at any given particular time *sigh*) ... and to help me sleep, I am on Trazadone (for neurological reasons, I can't get a regular sleep/wake cycle in place; this is slowly helping, but I still have those ups and downs) ... and for alertness, brain function alertness, and fatigue (the fatigue due to the disturbed sleep/wake cycles that come and go) I take Adderall XR ... for thyroid function (Hashimoto's Disease), I take Levothyroxine which has been consistently effective for about a decade now ... until recently, three times abnormal, but just last week ... tested normal -- so that, obviously is helping as well ... overall improvement and less daytime fatigue. Of course, my diagnosis still remains to be found ... however, being that this neurological mess and all this "phenomena" began in 1996, I am forever grateful to have finally found more effective medications ... along with absolutely effective ones as well, which is really great! My case, similar ... but considerably also very different as far as the condition(s) resulting in what we do share ... I post my informations just in case you may find these meds offered or considered as a possibility based on the findings in your case. Seems we share similarly, so perhaps this will supply you with some direction should you need meds upon diagnosis and the findings that pertain to you ... in which these others may be an option. Please post updates. Take care! Again, I'm very, very happy for you!! ~ Many Blessings to You ~ :) Moderators might not like my posts. Sometimes I need to post twice. :) I do not have epileptic-type seizures. Not sure why I was given Klonopin and why it was giving relief. But I am getting the feeling that while it is giving me relief, the underlying problem is not addressed. Sometimes the symptoms keep coming back. Were any test done to see that you had blood flow problems to brain? In my case it was just the opinion of my neuro. He is not interested in any further testing. He may settle with Klonopin.
    pelonis 9 Replies Flag this Response
  • Hi Neurotransmissing, Moderators might not like my posts. Sometimes I need to post twice. :) I do not have epileptic-type seizures. Not sure why I was given Klonopin and why it was giving relief. But I am getting the feeling that while it is giving me relief, the underlying problem is not addressed. Sometimes the symptoms keep coming back. Were any test done to see that you had blood flow problems to brain? In my case it was just the opinion of my neuro. He is not interested in any further testing. He may settle with Klonopin. Hi there pelonis, Klonopin is also prescribed for anxiety, very common; perhaps that's why you are getting relief ... along with the blood flow problems your neuro suspects as well. Perhaps your neuro will adjust the dosage or supplement the Klonopin, who knows; but it sounds like you're doing much better and finally have some direction ... thank goodness. I'm sure if your problems continue or worsen ... or there are new developments ... your neuro will examine other options. MRI films/reports evidence blood flow problems to the brain, in my case. Again, the combination of Klonopin/Clonazapam and Cymbalta have really helped me. Perhaps you could ask your neuro about that combination for those symptoms that keep coming back (Cymbalta stays in your system longer/better than Klonopin, which is more immediate and temporary relief). On one or the other, I wasn't treated thoroughly ... I needed both; perhaps you need a combination as well. Also ... the combination I am on may not be the one for you (that "hit and miss" stuff) ... but it's a good place to start, since we have this much similar to start. Anything is better than nothing at all when starting at the beginning ... have to start somewhere. :)
    neurotransmissing 145 Replies Flag this Response
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