Discussions By Condition: I cannot get a diagnosis.

Multiple symptoms, no real answers

Posted In: I cannot get a diagnosis. 13 Replies
  • Posted By: Anonymous
  • January 22, 2008
  • 01:09 PM

Hi all,

Me - Mid 30's normally very healthy.

Last April severe headache I treated it like it was a migraine at first with no relief. Within a week or so very tachy. I've seen 2 neurologist, cardiologist, allergist and endrocrinologist.

Symptoms: constant headache, tachy, elevated BP (although now it at times will dip very low when standing), alternating pallor and flushing of skin, fatigue, dizziness, I'm either too hot or too cold, sometimes shakiness.

MRIs of head and neck normal except small bulge in lower C-spine.

Cardio put on Metapropolol for tachyness - Dx sinus tach

After beginning med blood pressure started rising 4 increases in med since April - due for another raise again. Blood pressure is usually high even on med, but will have several days where it will dip down very low (especially when standing) On those days I can be very dizzy when going from sitting to standing position, turning quickly, sneezing, etc. Also, vision changes (black blobs in vision) Blood pressure was normal before beginning med.

Was tested for carcinoids, pheos, thyroid, diabetes, MRA of carotids, CT abdomen
All normal.

Flushing and pallor can also come and go. Flushing usually occurs when sitting or bent over and pallor upon standing.

The only test that gave some indication there might be an answer is my adrenaline levels (metanephrine, normetanephrines) which were elevated significantly (not significant enough for pheo). And Endo said metaprolol may artificially elevate levels. Although my symptoms sound consistant with high adrenaline output.

I am not having panic attacks and am not depressed (although this constant headache wears on me) The only med I take is listed above.

Has anyone else had the same problem and could give me another direction to look. I'm thinking about asking about a tilt table test for orthostatic hypotension.

Thank you for any of your input

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13 Replies:

  • Sounds somewhat similar to me. Any ideas??? Anyone??
    Anonymous 42789 Replies Flag this Response
  • I was about to say get tilt table testing done but then saw you already know about it. I do think that's likely to show up an issue. I know I have POTS which can cause some of the symptoms you are experiencing there (dizziness, BP drop on standing, shakiness, tachy (lol i cant spell it either), on standing etc) and if i did tilt table testing.. I know I'd completely faint. (I had to grap hold of something in chiropractors appointment as she had a table which raises some which I almost fainted with, I almost ended up on floor collapsed). I suggest you go to http://www.dinet.org/ and read some of the info there. I myself have found that doctors tend to just not know about these uncommon disorders, (I never could even get one to tilt table test me!) I have been thou since diagnosed with an autonomic nervous system (ANS) dysfunction.. due to what my BP does.. it goes very high at times 167/138 (while relaxed) but I havent actually got high BP as it also goes very low too...down to 70 something over 51. It's just one way a ANS dysfunction can show up... my BP just isnt stable. (no doctor or specialist is treating me for this as no one knows what to do about it!) (I then went back to my doctor and told him what the specialist had said.. only to have him say.. "Ive never heard of atonomic nervous system dysfunction). The specialist who diagnosed me was a brainy endocrine specialist (but also a scientist who was doing studies on the ANS). Good luck in getting a diagnoses if your issue involves this! (it's rare).
    taniaaust1 2267 Replies Flag this Response
  • I thought I'd do a post about POTS. So have cut and pasted the symptoms which can go with it. You can see Headache, high BP, dizziness, heat intollerance, feeling cold, tachy, low BP on standing.. all can happen with POTS http://www.dinet.org/symptoms.htm Generalized Complaint symptoms:**Fatigue 48% (Grubb, 2000) (which can be disabling) Sleep disorders 31.6% (Low et al.) (can cause unrefreshing sleep and an increased need for sleep)Headache/migraine 27.6% (Grubb, 2000)Myofascial pain 15.8% (Thieben et al., 2007) (characterized by regional muscle pain accompanied by trigger points)Neuropathic pain 3% (Thieben et al., 2007)Other symptoms reported in research that are not categorized above include: Dizziness (Grubb, 2000)Tachycardia (Grubb, 2000)Exercise intolerance (Grubb, 2000)Clamminess (Grubb, 2000)Anxiety (Grubb, 2000)Flushing (Grubb, 2000)Postprandial hypotension (Grubb, 2000) (low blood pressure after meals) Blood pooling in limbs (Grubb, 2000) (can make legs feel heavy and appear mottled and purple in color) Intolerance to heat (Grubb & Karas, 1999)Feeling cold all over (Grubb & Karas, 1999)Low blood pressure upon standing (Grubb, Kosinski, Boehm & Kip, 1997) (Some physicians feel orthostatic hypotension is a separate entity from POTS)Cognitive impairment (Grubb et al., 1997) (may include difficulties with concentration, brain fog, memory and/or word recall)Narrowing of upright pulse pressure (Jacob & Biaggioni, 1999)Cold hands (Low et al.) (and often feet & nose)Hypovolemia (Low et al.) (low blood volume)Chills (Low et al.)High blood pressure (Low et al.)Hyperventilation (Low et al.)Numbness or tingling sensations (Low et al.)Reduced pulse pressure upon standing (Low et al.)Low back pain (Mathias, 2000)Aching neck and shoulders (Mathias, 2000)Noise sensitivity (Stewart, 2001)Light Sensitivity (Stewart, 2001)Disequalibrium (Sandroni, Opfer-Gehrking, McPhee & Low, 1999)
    taniaaust1 2267 Replies Flag this Response
  • Hi all, Me - Mid 30's normally very healthy. Last April severe headache I treated it like it was a migraine at first with no relief. Within a week or so very tachy. I've seen 2 neurologist, cardiologist, allergist and endrocrinologist. Symptoms: constant headache, tachy, elevated BP (although now it at times will dip very low when standing), alternating pallor and flushing of skin, fatigue, dizziness, I'm either too hot or too cold, sometimes shakiness. MRIs of head and neck normal except small bulge in lower C-spine. Cardio put on Metapropolol for tachyness - Dx sinus tach After beginning med blood pressure started rising 4 increases in med since April - due for another raise again. Blood pressure is usually high even on med, but will have several days where it will dip down very low (especially when standing) On those days I can be very dizzy when going from sitting to standing position, turning quickly, sneezing, etc. Also, vision changes (black blobs in vision) Blood pressure was normal before beginning med. Was tested for carcinoids, pheos, thyroid, diabetes, MRA of carotids, CT abdomenAll normal. Flushing and pallor can also come and go. Flushing usually occurs when sitting or bent over and pallor upon standing. The only test that gave some indication there might be an answer is my adrenaline levels (metanephrine, normetanephrines) which were elevated significantly (not significant enough for pheo). And Endo said metaprolol may artificially elevate levels. Although my symptoms sound consistant with high adrenaline output. I am not having panic attacks and am not depressed (although this constant headache wears on me) The only med I take is listed above. Has anyone else had the same problem and could give me another direction to look. I'm thinking about asking about a tilt table test for orthostatic hypotension. Thank you for any of your input It sounds like adrenal related. (I am a Cushing's patient) any studies on the pituitary? Adrenal conditions usually just fall into 2 categories, so there could be something going on there. Oftentimes the adrenal output could be due to some other issue going on, e.g. physical stress, biological stress or psychological stress. Any joint/muscle pain, lymph glands hurting? Sore throat? Could be adrenal fatigue - but the tilt table test would show that. Magnesium deficiency can cause some of the above (migraines, adrenal stress, blood pressure and possibly tachycardia).
    LINENUP 122 Replies Flag this Response
  • I was about to say get tilt table testing done but then saw you already know about it. I do think that's likely to show up an issue. I know I have POTS which can cause some of the symptoms you are experiencing there (dizziness, BP drop on standing, shakiness, tachy (lol i cant spell it either), on standing etc) and if i did tilt table testing.. I know I'd completely faint. (I had to grap hold of something in chiropractors appointment as she had a table which raises some which I almost fainted with, I almost ended up on floor collapsed). I suggest you go to http://www.dinet.org/ and read some of the info there. I myself have found that doctors tend to just not know about these uncommon disorders, (I never could even get one to tilt table test me!) I have been thou since diagnosed with an autonomic nervous system (ANS) dysfunction.. due to what my BP does.. it goes very high at times 167/138 (while relaxed) but I havent actually got high BP as it also goes very low too...down to 70 something over 51. It's just one way a ANS dysfunction can show up... my BP just isnt stable. (no doctor or specialist is treating me for this as no one knows what to do about it!) (I then went back to my doctor and told him what the specialist had said.. only to have him say.. "Ive never heard of atonomic nervous system dysfunction). The specialist who diagnosed me was a brainy endocrine specialist (but also a scientist who was doing studies on the ANS). Good luck in getting a diagnoses if your issue involves this! (it's rare).POTS it is ladies and gents. Thank you so much for your helpful info. Super nice to know I had not gone crazy. Tilt table was confirmation. All initiated by a neck injury. Just a fair warning. I too visited a chiropractor for my initial severe headache (which normally chiropractic is very effective for my HAs) and the adjustments to the cervical area made symptoms go insane immediately for a few hours. Now I only get adjustments to mid back and lower back. Again thank you so muchBewildered
    Anonymous 42789 Replies
    • January 24, 2009
    • 06:04 PM
    • 0
    Flag this Response
  • bumping this old thread due to another i saw here the other day who i think clearly had POTS too and this thread has a good symptom list, hoping the other sees it. (if i dont find her post again)
    taniaaust1 2267 Replies Flag this Response
  • just bumping !
    pamelasmc 82 Replies Flag this Response
  • I have all the same symptoms with more head pressure as if overflow in my head and kidney pain all mine started with a kidney infection I thought now i have been treated for the infection and 2 months later increasing head pressure and pain in kidneys and left leg pain, they are going to do a spinal tap and check my intracrainal pressures and they did a medanephrines 24 hour ua to check for adrenal tumors,,,,anyone up for suggestions
    Anonymous 42789 Replies
    • September 1, 2009
    • 03:43 PM
    • 0
    Flag this Response
  • Hi all,Me - Mid 30's normally very healthy.Last April severe headache I treated it like it was a migraine at first with no relief. Within a week or so very tachy. I've seen 2 neurologist, cardiologist, allergist and endrocrinologist.Symptoms: constant headache, tachy, elevated BP (although now it at times will dip very low when standing), alternating pallor and flushing of skin, fatigue, dizziness, I'm either too hot or too cold, sometimes shakiness.MRIs of head and neck normal except small bulge in lower C-spine.Cardio put on Metapropolol for tachyness - Dx sinus tachAfter beginning med blood pressure started rising 4 increases in med since April - due for another raise again. Blood pressure is usually high even on med, but will have several days where it will dip down very low (especially when standing) On those days I can be very dizzy when going from sitting to standing position, turning quickly, sneezing, etc. Also, vision changes (black blobs in vision) Blood pressure was normal before beginning med.Was tested for carcinoids, pheos, thyroid, diabetes, MRA of carotids, CT abdomenAll normal.Flushing and pallor can also come and go. Flushing usually occurs when sitting or bent over and pallor upon standing.The only test that gave some indication there might be an answer is my adrenaline levels (metanephrine, normetanephrines) which were elevated significantly (not significant enough for pheo). And Endo said metaprolol may artificially elevate levels. Although my symptoms sound consistant with high adrenaline output.I am not having panic attacks and am not depressed (although this constant headache wears on me) The only med I take is listed above.Has anyone else had the same problem and could give me another direction to look. I'm thinking about asking about a tilt table test for orthostatic hypotension. Thank you for any of your inputI have all the same symptoms with more head pressure as if overflow in my head and kidney pain all mine started with a kidney infection I thought now i have been treated for the infection and 2 months later increasing head pressure and pain in kidneys and left leg pain, they are going to do a spinal tap and check my intracrainal pressures and they did a medanephrines 24 hour ua to check for adrenal tumors,,,,anyone up for suggestions
    happister 1 Replies
    • September 1, 2009
    • 04:06 PM
    • 0
    Flag this Response
  • I have all the same symptoms with more head pressure as if overflow in my head and kidney pain all mine started with a kidney infection I thought now i have been treated for the infection and 2 months later increasing head pressure and pain in kidneys and left leg pain, they are going to do a spinal tap and check my intracrainal pressures and they did a medanephrines 24 hour ua to check for adrenal tumors,,,,anyone up for suggestionsI have had the same symptom as in head pressure after taking doxycycline which is a tetracycline antibiotic. Did you take an antibiotic for your kidney infection? I've been trying to get a diagnoisis for 11 months now. They are going to still check on Superior Vena Cava Syndrome. I don't think they will find anything in my case because I believe the doxycycline destroyed my body since I got sick when I was taking it. Good luck with your finding out your cause.
    Anonymous 42789 Replies
    • November 26, 2009
    • 00:24 PM
    • 0
    Flag this Response
  • Hi all,Me - Mid 30's normally very healthy.Last April severe headache I treated it like it was a migraine at first with no relief. Within a week or so very tachy. I've seen 2 neurologist, cardiologist, allergist and endrocrinologist.Symptoms: constant headache, tachy, elevated BP (although now it at times will dip very low when standing), alternating pallor and flushing of skin, fatigue, dizziness, I'm either too hot or too cold, sometimes shakiness.MRIs of head and neck normal except small bulge in lower C-spine.Cardio put on Metapropolol for tachyness - Dx sinus tachAfter beginning med blood pressure started rising 4 increases in med since April - due for another raise again. Blood pressure is usually high even on med, but will have several days where it will dip down very low (especially when standing) On those days I can be very dizzy when going from sitting to standing position, turning quickly, sneezing, etc. Also, vision changes (black blobs in vision) Blood pressure was normal before beginning med.Was tested for carcinoids, pheos, thyroid, diabetes, MRA of carotids, CT abdomenAll normal.Flushing and pallor can also come and go. Flushing usually occurs when sitting or bent over and pallor upon standing.The only test that gave some indication there might be an answer is my adrenaline levels (metanephrine, normetanephrines) which were elevated significantly (not significant enough for pheo). And Endo said metaprolol may artificially elevate levels. Although my symptoms sound consistant with high adrenaline output.I am not having panic attacks and am not depressed (although this constant headache wears on me) The only med I take is listed above.Has anyone else had the same problem and could give me another direction to look. I'm thinking about asking about a tilt table test for orthostatic hypotension. Thank you for any of your inputi hope you get this,,, please have yourself checked for pheocromocytoma,,, look it up maybe its what you have!! it has to with your adrenal glads on your kidneys , high blood pressure is a key factor and a simple 24 hour pee test will show it,,,
    Anonymous 42789 Replies
    • December 3, 2009
    • 10:28 PM
    • 0
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  • Just bumping!
    Anonymous 42789 Replies
    • December 28, 2009
    • 02:53 AM
    • 0
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  • Just bumping!Bumping too!
    Anonymous 42789 Replies Flag this Response
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