Discussions By Condition: I cannot get a diagnosis.

Meningitis and headache- please HELP!

Posted In: I cannot get a diagnosis. 12 Replies
  • Posted By: Anonymous
  • June 10, 2007
  • 04:54 AM

:( My 21 year old son has been ill for about 3 months. It began with upper abdominal pain and has progressed through a variety of symptoms such as blurred vision, headaches, nausea/flu-like feeling, foggy-head, insomnia, inner tremors/twitching, occasional diarrhea, hair thinning on top of his head, muscle aches after exertion, spitting up blood after exercise on a couple of occasions, low-grade fever a few times... He had mono 6 years ago, and a case of shingles about 31/2 years ago, chlamydia 4 years ago, severe virus's a couple of times, shigella 21/2 years ago. He has now had 3 CT scans, chest x-rays, stomach x-ray, upper GI, Blood checked at least 3 times, all STD checks negative.

Last sunday we had to take him to the ER with a severe headache- hurt so badly his legs were twitching on the hospital bed. He had the headache to a lesser degree for about 4 days. They did tests, including a spinal tap and said he had viral meningitis. Put him on IV fluids, antibiotics, and pain meds for 2 1/2 days and released him on Tuesday. He ended up back in ER by Wednesday pm because of severe back and head pain again. He was told they needed to do a "blood patch" because his pain was probably from the spinal tap, but they chose to give him caffeine IV's all night long instead for his headache. The anesthesiologist who does the blood patches said the procedure may make things worse. He came home Thursday with a scrip for vicadin and instructions to drink plenty of fluids and caffeine. It is Saturday night and he still has severe headache. Pain is on top left side of head, throbs, and he says he can feel his heartbeat in the throbbing. When he takes caffeine pills he says he feels a "popping" in his head after awhile and the pain lessens but does not go away.

He is going back to ER in early am when they are less busy for a re-check. We are trying to find someone who may know the following:

1. Was it BS about the blood patch making things worse???

2. Can you have meningitis for a period of three months with it culminating in severe illness toward the end, or is the incubation period short before illness hits? (which means something ELSE caused the meningitis)

3. How long does one have a severe headache with meningitis?? Or is the most probable cause of still having pain the spinal tap and spinal fluid leaking?

4. What tests should be run to check his spine and fluids??

PLEASE---any help you can give- my son is so depressed with the constant pain. And I am scared.
Thanx, MY sons mom

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12 Replies:

  • Can you trace back to beginning of his symptoms/onset?. Did he sustain a severe trauma(accident), did he have a severe illness(flu?) or did he have a recent vaccination, perhaps for college enrollment?Look into Chronic Fatigue SyndromeRead thread here in this forum titled CFS/ME/AutoimmuneMany patients are testing positive for many viruses and even testing positive for Chlaymidia and sometimes Syphillis.Much is being traced back to vaccines
    Anonymous 42789 Replies Flag this Response
  • This is exactly what happened to me- tummy problems and a swollen brain.Please- get a Doctor of Oriental Medicine that works with NAET. Also, find a Reiki practitioner.naet.comthis problem does no go away- it is here to stay if you try to fix it with one pill or several.That happened to me 10 years ago, and I am finally getting the right help.Fruity.
    Eatafruit78 960 Replies Flag this Response
  • Please list any other symptoms?Does he have a rash? Any abnormal labs?Fever?Has he developed a rash called "petechiae"? If so, and if you see it spreading it is a warning sign to get to the ER fast.So sorry you are going through this and I wish I had more to offer. I had a "scare" once with my daughter in that they thought she had bacterial meningitis....the one's college students get and die from within 24 hurs. Turned out to be a "really bad virus" -- official diagnosis.The petechiae she developed scared the crap out of the Dr.'s. Was his spinal fluid clear upon tap?Also...you mention he is 21. Did he receive the meningitis vaccine? Any other vaccine's? Think of anything, even if it is you think it is not relevant.
    Anonymous 42789 Replies Flag this Response
  • Meow1, this is my understanding. 1) Blood patches can cause temporary discomfort and they only work in about two thirds of cases. This is probably what the doctor meant.2) and 3) Viral meningitis can develop suddenly or over a few days. It can be caused by a number of different viruses however, and although it usually clears up in a couple of weeks, it can sometimes hang around for much longer. It might be that your son has been suffering with a virus for some time and this developed into meningitis, but it is guesswork. What is important is that it is now identified.4) Presumably they have carried out the tests to check his spinal fluids when they identified it. So I am not sure what more would need to be done. There is no specific treatment for viral meningitis except rest and painkillers. I am afraid that he will just have to weather it out. I don't like the sound of him hearing his own heartbeat in his head though and you should mention that to the doctor. It might be that the caffeine is increasing his blood pressure too much. I don't like the sound of him spitting blood when he was exercising also, and this should be mentioned likewise.
    Anonymous 42789 Replies Flag this Response
  • yes, there seems to be a lot of talk of "really bad viruses". many are connected with Chronic Fatigue Syndrome. Some are Lupus, Lyme, HH6, Epstein Barr (mono)
    Anonymous 42789 Replies Flag this Response
  • To All Who Replied- My son has had no vac's since he was a child. He has had no major illnesses or injuries in the last year. He has had a problem with getting sick easily but it usually clears up within a week or so. No rashes so far. He still has head pain and I am trying to get him to go back to the ER for follow-up. He can't live on vicadin (spelled wrong?),and has only 3 left at any rate. What then? The Dr's gave no details on his tap except to say he had "slight" meningitis, or was at the tail end. I guess he needs to request all of the details on his blood and tap workups and CT scans, x-rays. His greatest concern right now, along with the headache, is the fact that he has hardly slept in literally MONTHS, no more than 5 hours a night.Any suggestions for sleeping? He says his heart races when he tries to sleep. He finally falls asleep and is waking up around 4:30-5 am every day, no matter what time he goes to sleep. I think he needs anxiety help. He has MAJOR stresses in his life right now, on top of the illness. Thx, Kim
    Anonymous 42789 Replies Flag this Response
  • To All Who Replied- My son has had no vac's since he was a child. He has had no major illnesses or injuries in the last year. He has had a problem with getting sick easily but it usually clears up within a week or so. No rashes so far. He still has head pain and I am trying to get him to go back to the ER for follow-up. He can't live on vicadin (spelled wrong?),and has only 3 left at any rate. What then? The Dr's gave no details on his tap except to say he had "slight" meningitis, or was at the tail end. I guess he needs to request all of the details on his blood and tap workups and CT scans, x-rays. His greatest concern right now, along with the headache, is the fact that he has hardly slept in literally MONTHS, no more than 5 hours a night.Any suggestions for sleeping? He says his heart races when he tries to sleep. He finally falls asleep and is waking up around 4:30-5 am every day, no matter what time he goes to sleep. I think he needs anxiety help. He has MAJOR stresses in his life right now, on top of the illness. Thx, KimThis pattern that your son is showing comes to many of us after we caught a virus or something that we called 'the flu'.I had strep and something like the Norwalk virus back in November 06 and all ***l broke loose for me.I had the same problem- I would go to sleep and suddenly wake up with palpitation. My heart was racing. I had bad lymph node swelling, food intolerance, tingling, numbing, etc.I developed allergies to my bedding and pajamas.No doctor was willing to listen to me- They said I was having panic attacks because I was too depressed about being sick. They even misdiagnosed me with Hepatitis- it was awful. I had blood in urine, no trace to identify what was eating me alive, low grade fever- lots of pain, and mental fog.Please try the best Doctor of Oriental Medicine that you can find, Reiki and NAET.Vitamins and minerals and Oil of Oregano- helped me so much, before I found the right help.Oil of Oregano is a must try- it is gentle in the liver, safer than tylenol, benadryl, etc.I used to drink ginger/onion/cinnamon tea when I could not sleep. Best.Fruity.if you, or the father of your son had vaccines, whatever contamination on the vaccine that you received might transfer to the child's DNA. At least, that would explain why people who have degenerative diseases conceive children with poor immune system and learning disabilities. Hope it is not the case.
    Eatafruit78 960 Replies Flag this Response
  • It sounds like your son has the symptoms of ME (chronic fatigue). Disrupted sleep makes this self perpetuating and exacerbates the problem. Caffeine won't help his sleeping difficulties. I would doubt that anxiety is the root cause of his problem, although he might well be anxious as a consequence of his illness and lack of sleep. I think that treating the anxiety and ignoring the cause is not going to be a great deal of use other than keeping a psychologist employed.
    Anonymous 42789 Replies Flag this Response
  • Kim, fruity above is correct on every account. CFS is what many of us have. Allergies cause several "symptoms" One of them being the heart palpitations. Allergies happen with autoimmune issues which is what CFS is or will be considered shortly.Look into local NAET therapy for your son. It sounds crazy but they will be able to tell what he is allergic to, and even teach him how to overcome symptoms and keep them at bay.If he is allergic to polyester, lets say, all it would take would be for him to avoid anything made with it.Also, peole with CFS develop many food allergies and sensitivitesI dare to say that many are wrongly diagnosed with meningitisalso, a slight case or the tail end?Your son would have noticed symptoms well before the tail end of something like meningitisMany are getting relief from herbal supplementsI know kava kava works like an antianxiety without causing liver-kidney damage like traditional antianxiety meds(Xanax)There are also herbs for inflammationTry the Oil of Oregano mentioned above, as it kills bacteria, viruses and fungiHas your son's doctor considered CFS?
    Anonymous 42789 Replies Flag this Response
  • It sounds like your son has the symptoms of ME (chronic fatigue). Disrupted sleep makes this self perpetuating and exacerbates the problem. Caffeine won't help his sleeping difficulties. I would doubt that anxiety is the root cause of his problem, although he might well be anxious as a consequence of his illness and lack of sleep. I think that treating the anxiety and ignoring the cause is not going to be a great deal of use other than keeping a psychologist employed.I agree 100% - In my own case, my doctor wanted to give me sleeping pills, and it was a really bad idea! My "panic attacks" were the symptoms of immune disfunction- a problem that needed to be corrected by dealing with the nervous system, no suppresed by the use of sleeping pills.General doctors don't understand this concept and love to fill in the gaps with "it is in your mind" "its all in your mind" - instead of honestly saying that they don't know what's happening.
    Eatafruit78 960 Replies Flag this Response
  • Hi,Sorry to hear about your son. How is he now? I had a similar experience with throbbing heart beat in my head type headache and had viral meningitis. This happened to me in June 2004 and I also had to get a blood patch after a difficult tap that left a leak. Unfortunately, I had been left with a chronic headache or what I like to call "head pain" because it's not like a regular headache. I am 35 years old and am being seen by a headache specialist and trying to find a treatment for the chronic pain. From what I understand, it is possible to suffer from a chronic postmeningitis headache, although it is rare and not very well understood. I have started a support group dedicated to this problem and you are welcome to join.On this site, I have posted/uploaded the available research that I have found, which is very little...I hope that your son has recovered fully and if not, I hope that he does not lose hope or feel alone, because he is not. Here is the web address to the site: http://health.groups.yahoo.com/group/PostmeningitisHeadache/All the best to you and your son. Please give him my personal regards from a fellow sufferer. ...Laura
    Anonymous 42789 Replies
    • November 12, 2007
    • 05:19 PM
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  • Hi Im Ginas mom My daughter,also 21, started having headaches. At 3 months pregnant the doctors said they were migraines They treated her with shots in the neck for pain, also giving her muscle relaxers, and shots for vomiting. This went on until after the birth of her daughter. Her headaches started out bad. She had to squeeze her head to help with the pain. 1 year ago in november the doctors did a cat scan of the brain, where they found a tumor.This tumor was what they call blastomycosis. It is a rare fungal infection. The tumor was removed and she was given Fluconasol for six months. In the meantime, she continued to have headaches. The symtoms you have decribed sound alot like what she had. This fungi is mostly in the Great lakes area, also people who work with the soil also get this. The center for diease control told use it is becoming a epidemic in some areas. It ususally stays in the lungs and can produce the same symptoms as the flu. In my daughters case in went to the brain. The nuerologist began treating her for migraines, not checking that the blasto was still there . I tried to get her into clevland clinic but the dr said you dont go there for migraines. Please check every avenue. dont let them tell you the same thing . My daughter died August 27 due to blasto menigitis of the brain stem and the cerebellum
    ginasmon 4 Replies
    • November 13, 2007
    • 03:17 PM
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