NaomiSpellman

I have terrible sensitivity to any pressure, metal, or textiles on my skin. I get diarrhea just from wearing loose shorts around my waist. I get a migraine if I put on a bra within minutes (sinus tachycardia?). I am naked at home, unless I have to cover up.

You can get some pine 2x4's cut to match the length of your bed (or slightly shorter). I had about 8 of these for my old twin bed. Then you also want a 2x4 cut to match the width of your bed (or less). Place the single short piece across the top of your bed frame or platform (along the top where you will lay your head). This short piece will raise one end by 2 inches. Then lay the long pieces on top of that, spaced out as needed. Then your mattress can rest on top of the long pieces. The spaces in between will also help your mattress breath better.

Thanks Blue. I appreciate it. It seems like migraines respond to meds in strange ways, and it also seems like migraines respond to themselves in strange cycles. I am scared b/c I am getting manic from being up night after night. I can sleep for a couple hours, then wake up with migraine. I am afraid to go to sleep, and it is making me manic. Headaches are coming when laying down mostly. But I am afraid to try opiates b/c they are addictive, and because as you and others point out, they have a limited usefulness. Were you every prescribed Ketamine? Based on the research I did it seems promising. I am thinking of going to ER; don't know if they would give it to me, or even how I would explain the complexity of the range of symptoms and how they might impact the choices made here. RE: allodynia: I read about ketamine and pain – specifically pain caused by a misinterpretation of mild stimuli which don't normally cause pain. Based on the reading I did ketamine has been successful for this type of pain for some patients. I don't know, however, how safe is ketamine for POTSIES, whether it is addictive like the opiates. One thing I understand from my reading: Ketamine in some pain cases has been successful after just one dose. The nasal spray apparently works fast and can be redosed as needed. Argh. Have you tried acupuncture? I have had great success with acupuncture and migraines, perhaps because one of my triggers is sinus tachycardia. It seems like the needles iimprove blood flow. I can't pay for it now, but I am thinking of asking my acupuncturist to treat me tomorrow "on loan". Too bad the health insurance companies don't pay for acupuncture. I hope they will soon, as they are not supposed to be able to disallow any licensed healthcare practice according to new ACA laws. ALso, have you tried medical marijuana for the allodynia? I get relief from neuropathic symptoms with it (itching burning skin allover; motor jerkiness); I don't know how that relates to what you're going through. Just a thought, if it is accessible wherever you are in the world. The indica strain has a neuroprotective and anti inflammatory effect. Thank you for your info. I hope you can find relief. Best, Naomi

I don't have insurance for pills, but Coffee seems to be consistently helpful, though in controlled quantities.

Those who've been on Amitriptyline: has it negatively influenced your heart rate, arrhythmia, or vascular symptoms (for example sinus tachycardia irregularities)? I was under the impression it might be unsafe for POTSIES. Looking for clues. Thank you!

Do you have urinary symptoms (pain, burning, difficulty urinating)?

"We don't see anything wrong with you. But if you experience any changes, let us know." said to me by my then-GP, who pulled in several staff members to stand around me in a threatening manner, while I sat in the middle. They never ran a single test though I came in 4x that year to try to get them to help me. And *** does mean "changes" to a POTSIE anyway?! There are nothing but changes. No day is the same. Every day is full of surprises. "May you live in interesting times", indeed! May you live in an interesting body.

Both my Mom and I are the largest among our siblings. Neither are first born (we are the youngest). Both of us have: bradytachycardia, exercise intolerance, heat intolerance, orthostatic intolerance, and syncope when young. Her symptoms stop there. Mine go on and on... Neither of us had a single trigger; both had lifelong symptoms. I was physically very strong when young; never stopped moving.

I have had symptoms my entire life, though always shifting. More and more co-occurring symptoms. One of my parents has similar diagnoses but not as pervasive/disabling. And this same parent;s siblings: many autoimmune diagnosis (Edamatosis, FM, connective tissue disorder).

So wierd my headaches/migraines are kicking in while laying down, the opposite of what the above experience! I have been afraid to lay down completely horizontal since Monday as I have recurring headaches (with other symptoms kicking in at same time) I assumed that these headaches that occur with changes in position are related to Sinus Tachycardia? That is, when our heart rate is out of sync with the rate of blood flow through our body, strange sensations/pressure occurs at different points. I often "feel" this pressure acutely in particular points, almost like I am having a migraine in my: throat, back, shoulder blades, etc. What do you take for these headaches? Is there anything that helps? I know I have to stay miles away from: beer (an occasional indulgence in small quantiites during better times). And I know that daily stretching helps. I have been drinking coffee to keep these headaches at bay all week; it does the job I am assuming b/c it shrinks vessels in my brain? My poor brain.

Need help with advice from those who know. Daily recurring migraines since Monday. Sinus tachycardia-related; can't lay down at night for fear of instant migraine. What to do? No insurance card (yet, waiting for response after applying last year); no $. Can't tolerate prescription migraine pills due to arrhythmia, vascular problems, and seratonin issues ( Bipolar). I am surprised others on this forum are taking amitriptyline as it is not reccomended with vascular and arrhythmia problems. Has anyone had Ketamine (IV or nasal spray) administered for migraines? Opiates? Am thinking of going to ER to seek help. Anyone have experience with these drugs AND POTS! Thank you anyone for infos. P.S. I hope no one is offended by the exchange of info re: meds, I hope you will understand that there are other opinions than your own. I have had to go 25 years without insurance or help from doctors through no fault of my own (too many pre-existing conditions). When they have prescribed anything to me (surgeries, pills), it turned out to be dangerous and inappropriate (now that i know my diagnoses). So please, deal with it. People on this forum are WAY more knowledgeable than docs re: what is safe for us. My uncle was killed by prescribed meds; it happens all the time to people like us with multiple diagnoses. Tho I do appreciate your tax contributions. Truly, Naomi

DBP4620, Sufilizard, and others: Did your ear itching start deep inside the ear? I have had lifelong ear problems (pressure, vertigo when traveling, pain when diving, tinnitus) but the itchy stuff started after irritating my ears in the winter when I was in the cold ocean. After getting buried by waves a couple times one day, my rotational vertigo problem started. Then I got terrible itching inside both ears, leaking brown fluid, tinnitus, sounds like being underwater (strange sound effects). I was so dizzy I had to hold on to the walls at work, and got really distressed and confused when standing. After 5 doctor visits that winter – including one to the ER after stabbing pain one night in right ear (entire right side went numb and stiff) – I was unable to get help. My GP prescribed me OTC antihistamines. The ENT said I caused these problems myself with Q-tips (“Q-tip trauma” is what she wrote on my record.) Another one gave me Erthromyacin at my insistence despite getting “all clear” assessment from physician. I also got Ciprofloxacin that year, again at my insistence, although tests were negative for infections. All to no avail. A couple years later I had itching again deep inside my left ear. It spread to outer ear eventually, then these same symptoms started in right ear. Last summer my Neurologist prescribed Acyclovir for various symptoms (Cysts in outer ears and bottom; vertigo) and low and behold my vertigo stopped! I almost fell over in relief and shock. I had forgotten what it felt like to feel calm inside my head after 6 years of non-stop spinning sensations and nausea. I acquired a resistance to the Acyclovir after a couple months. I have gone through 2 rounds of Valacyclovir in the last couple months, mostly to keep the Shingles in remission. The new symptom: Today I got burning “hot” feeling in both ears, and I got really angry and terribly agitated at the same time. I was screaming at my son for no reason (I think he just said he wanted something to eat). I had to apologize to him and tell him I wasn’t feeling well today. I had terrible anxiety, panicking, and general malaise. Felt “numb” and exhausted after this attack. I felt better much after I finally got to lay down today. I got off Valacylovir 4 weeks ago, and am wondering if these ear symptoms are a result of the ear problems creeping back in a new form. Have had intermittent dizziness, and vertigo while traveling, but thank god the rotational vertigo has not come back. I have had problems with occasional rage episodes all my life which I attributed to Bipolar. But today the combo of acute ear symptoms together with sudden and really bad rage/agitation – I am starting to rethink this symptom. There is an old saying “hot around the ears” and I have often suspected a connection with acute emotional response, agitation, and ear symptoms. Has anyone else had this kind of combo? I know Van Gogh had temporal epilepsy and terrible ear problems, rage. Sometimes these episodes leave me numb and feeling shell-shocked. But I don’t have the other seizure-type symptoms. I really appreciate the comfort I get from this forum. Just reading all the odd problems makes me feel less alone! Thank you.

I had to get off beta-blocker Verapamil due to lowering BP, worsened OI and Bipolar symptoms. I became suicidal and had to get off it cold turkey one day. Too bad because it did help with migraines and upper body achiness from Sinus Tachycardia. I am afraid to go on pills again. Are you feeling fear, impending doom sensation (like something terrible is about to happen)? Or do you mean fear of med side effects?

Racer and k&ajsmom: Thanks for your observations. I will discuss these with my Cardio and I hope to start seeing a real psych soon ( in addition to my current CBT student counselor who is great) and I want to discuss medication options and non-chemical treatments. I am hoping to get in with a Psych doctor who is accustomed to dual diagnosis/comorbity issues, because I have run up against complications before and it is scarey! I appreciate your thoughts.

I would recommend eating slowly and carefully. Don't take big bites. Don't gulp food. Don't drink until food is all cleared. Avoid cold drinks. For pain in feet/legs: try compression hose (put them on before you get out of bed in the a.m. and leave them on as long as you can stand them). Put feet up intermittently whenever you're out and about. SHOES are important! I only wear Keen's because I get blisters/pain from other shoes. They make shoes for nurses and such, but all their shoes have good support and don't bind the feet when swollen. Maybe ice baths would help feet? Massage helps.

Hah yes I have very itchy ears! I was told I had a fungal infection in one ear, but subsequent checks turned up nothing. Started in one ear, then the other. Intense around perimeter/outside edge, burning sensation. No, not from drugs. I am normally not on any meds. Also, from angelloz: "Does anyone else experience disequalibrium?" Yes for sure. Can't find my way out of a paper bag when symptomatic! Do we want North or South? Which way is up?

Help! I am going to see Dr. Ahern this Friday and need advice. My employer has thankfully finally implemented a daytime only work schedule due to orthostatic intolerance. It is a huge help to me, and makes all the difference in my ability to get to work. This accommodation, along with remembering to stay seated, is invaluable. But problems remain. I wanted to ask your opinions re: worsening symptoms. Have any of you asked for the following functional limitations? Are they standard for Dysautonomics? I would so appreciate your thoughts re: managing work. Letter for employer re: Functional Limitations Cannot work in evening. A late morning or midday start time is ideal. Cannot stand at work (must be seated). Can not carry or transport items over 0.4 lbs. Total work hours not to exceed 10 hours/week (goal is to limit number of classes to one class at a time) Must occasionally take time off to negotiate severe symptoms, changes in symptoms, and changes in treatments (1-2 weeks)I greatly appreciate hearing about your experience with negotiating work limitations! Thank you! Naomi

My house is disgusting.

Burning feet when fatigued (allover the surface but also pain inside feet and ankles) Urinating: pain, frequency, stoppage Dark Urine Blood in stools Yeast Infections Dry irritated eyes and nose Receding gums (from young age) Depressurized eyes Joint pain and weakness (sprains, breaks, spine compression, sciatica) Hypermobility Hypoglycemic episodes Numbness/immobility on one side (during acute OI episodes) Limbs falling asleep quickly (during acute OI episodes) Red patches (thighs) Temporary loss of vision in one eye (is this vision change? I also get partial occlusion or grey outs in both eyes in morning when dehydrated) Epiglottal valve malfunction (when eating) Nystagmus Vertigo Vomiting Drop attacks Auras (during migraine) Night Blindness Chemical sensitivity Weak finger/toenails (ridges, bumps, breaks) Speech difficulty (slurred speech, spoonerisms with stuttering, slow speech, wrong volume) Frequent yawning (when well rested) Excessive drooling Sorry for TMI but I would really like to know if these are unusual? I am trying to sort out the Dysautonomia from the Bipolar, but these really are not bipolar symptoms as far as I know based on all my years of treating that. Thank you, Naomi.

Thank you. What is an autonomic specialist? I am seeing a Cardiologist who has many POTS patients. Though in my experience doctors generally don't ask what you are already on, and don't bother to see if there are counter indications. I have pretty much figured out the drug side effects are just too dangerous for me.

Are others having trouble with bras causing migraines and blood flow problems? I recently found out what sinus tachycardia is. I must have been dehydrated that day when I got home. It was very warm and I was out too long. Everytime I bent over, laid down, or got up from laying down, I instantly felt pressure in the front of my forehead/sinuses, then got an instant migraine lasting anywhere from a few seconds to perhaps over an hour. Not the usual migraine pattern for me. I spent the night vomiting and sitting upright for fear of triggering more pain. Anyway I have had to give up bras, shoulder bags, purses, fanny packs, and even tank tops (!!!!!!). It is not so bad in the winter because I can cover up, but now it is harder as I am getting overheated. Lots of stupid comments like “Here comes trouble” or “Watch out”. As if someone in my state could possibly be dangerous! LOL. Any advice? I tried every bra configuration but it doesn’t matter where the pressure is. Any pressure on the upper body is bad news. Argh. Things go from bad to worse.

The last time I went under I had significant problems, but that was 30 years ago in Germany and I don't know wht they used on me. I could NOT snap out of it, I kept passing out again and again even as they were trying to get me out the door to my ride (it was an outpatient procedure). I went straight to bed and slept for 20 hours, waking up the following day. I had no idea what day it was when I finally came to. It was scarey, but I remember I felt really euphoric once I woke up! Everything seemed particularly alive and wonderful. Maybe you should remind them to carefully monitor your blood pressure

How did he diagnose you? Did you get a DNA test to confirm this? I have had lifelong autonomic problems, some of which were chronic when I was very small and are now returning over 40 years later. Among my mother's siblings, all of them - save for one - have autoimmune diseases. This can't be a coincidence, can it?!! I am not Ashkenazie Jew either, but now i am wondering if I should get tested for Familial Dysauto. Thank you for any advice you can give re: diagnosis. Definitely being comorbid makes it so hard to diagnosis - even to get someone to listen is so difficult.

I came to this same conclusion re: ssri's.

I was on Wellbutrin for 3 years for Bipolar, but I ended up collapsing for 4 weeks with "adrenal fatigue" due to how it over worked my adrenal glands (already overactive due to low BP/POTS). It did give me extra energy while I was working over-time. It took away chronic back and joint pain so that I was able to return to skating and other activities I had given up. It made me manic pretty much all the time. I would be careful with this type of drug over the long term due to liver and kidney damage.