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My Journey


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Where to even start? The more I learn about this disease I?m almost certain that everything that has ever been wrong with me is related to this. But if that?s the case, now that I?m 38 and it?s at its strongest I have to come to terms with the idea that this is my life with no hopes for any change.

I started to get horrible migraines when I was 11 years old, I can remember going into the office calling my Mom and trying to hang the phone up on the stapler over and over. Phrenilin was the only thing that worked, IF I caught it on time. They kept going strong until I was in my early 20?s, then the good Lord gave me a break with that. Only to start a long road of back trouble which began when I was a junior in High School. As the day progressed I had to walk like Tim Conway and couldn?t go any further when I was half way home. Doctors said it was muscle spasms and put me on bed rest for two weeks.

I got married early, after high school graduation and one year later had my first child, a beautiful baby boy, Landon. The back was an intermittent thing at this point; good days and bad days, simply folding clothes could set it off. But the new thing I was faced with was Shingles at age 19, which still visits me quite often. I got pregnant again and had a beautiful baby girl Leighton at age 20. Had a few complications with her birth. First of all the cord was wrapped around her neck and what seemed like an eternity before I heard her faint little cry, but praise God, she was fine. Me on the other hand? my blood pressure crashed, got down to 60/40. I just remember feeling so peaceful. After lots of hustle and bustle the staff was able to raise it again.

The next thing was having my tubes tied in 2000; I had a strong reaction to the anesthesia. Felt no different than what I?d imagine fire going into my veins would feel like and my heart rate and blood pressure got very high. The next thing I knew I was waking up with the Doctor telling me ?you gave us quite a scare?.

All was well except occasional back trouble and shingles. Next, I started having weird flushing, total dizziness, trouble getting a breath and would see white dots in a black world. Hopefully my husband would be around to grab me and sit me down. Only one time I actually went down. I?d have completely strip and get in front of a box fan on high and turn the air way down. After about 15-30 minutes I?d feel very weak but I could carry on with my day. I never went to the doctor for this because I knew I?d have to be having an episode for them to tell anything and I certainly couldn?t go anywhere when it was happening! This kept going for a few years on and off and then the worst thing I?ve ever dealt with started happening.

In 2003 I started this horrible ?throw up thing?. Like no stomach virus, no food poisoning, and no normal throwing up feeling. It?s very hard for me to describe and I still don?t have the right words. I knew from the second it started if this was going to be the ?BAD? throwing up. Violently throwing up about 28 times in 30 minutes (never stopping). It has something to do with my breathing; every breath in and out was the worst feeling of nausea possible. If you ball up your fist and put it right in between your breasts and down a cm or two this is where that feeling is. Not burning, not stabbing. The best I can get is somewhat of a grinding, wrenching, painful, intense feeling. Also it?s exactly the opposite of normal ?POTS? days. I am drawn to HOT water?it is the ONLY thing that gives me a moment of relief. So I?m in the hot tub again almost as soon as I get out. Also I DO NOT have any of the regular hot water symptoms when this is going on, just regular red skin from hot water. It also feels better when I can get my heart rate UP which lessens that painful feeling in my chest. This would go on from 2-5 days. I?d sip Gatorade trying to maintain knowing that it was coming right back up but it was better than dry heaving after all the bile in my body was gone too. Anything over 24 hours I?d end up in the hospital dehydrated with them not having a clue what was wrong with me or what to do other than give me fluids. When they admit me they give me phenergan/demerol shots, which sometimes helps a bit too, especially for my back, which is almost unbearable from vomiting like that. But if I have to go to the ER and they don?t admit me they do nothing but watch me and give me fluids...PITIFUL!! They diagnosed me with IBS, started me on yet another pill which never helped anything either.

My back is still my top priority because it?s an all the time issue. Going to doctor after doctor, nothing showing on MRI?s, CT?s etc. Yet I?ve gotten to the point I can hardly stand anymore. One Neurologist told me I needed to see a Psychiatrist. I turned into Satan at that point and let him have it. Others thinking I?m only trying to get drugs. Thank God my family doctor could see my pain and had empathy. He gave me shots in my back, and meds. I also went to physical therapy and a chiropractor trying to get relief with very little success.

Then something new started again. When I went to the bathroom massive amounts of blood was coming out (from the wrong place). I had a colonoscopy and other tests with guess what?.?everything looks normal? as the result again. It stopped on it?s own so I forgot about it for then. Happened again a few weeks ago.

I finally got to the point that I couldn?t stay upright for more than 5 minutes without being in excruciating pain and my GP sent me to Memphis to an Orthopedic Surgeon this time. MRI?s would show bulging discs and spondylosis but nothing bad enough to require surgery. I started getting a different kind of injection in my back every month, one that I had to be put to sleep for. (Can?t remember the name). I actually starting getting some relief and could lead some semblance of a normal life. But after about a year of this, they quit working too. I had a Discogram. This Finally SHOWED how bad 4 of my discs were after more than 10 years of being in pain! I was scheduled for surgery the following month. (My best friend was getting married, I was a bridesmaid and I wasn?t letting her down. Speaking of, it was a rainy day wedding and I was in SO much pain to begin with. I forgot something in the church as everyone had left for the reception so I went back to get it. I slipped on the step outside coming out and went tumbling down. Really couldn?t move then! One week later, had Transformal Lumbar Interbody Fusion (TLIF). The doctor said as soon as he made the incision the disc flew out and of my body and hit the ceiling! Take that Psychiatrist!! I only thought I knew what pain was until that point!! OMG, the terror! Got out of the hospital 5 days later and started working on months of recuperation with home health and PT. Doctors decided it was unsuccessful after about 6 months of my still being at about the same level of pain I was beforehand.

I was then sent on to Pain Management. Here they tried Facet blocks, no success. Fentanyl patch was next, my whole body swelled, face and all. Next we tried the Neurostimulator. I had the trial version implanted. It was to help with the pain that shot down my legs (both, it switched up all the time). It did this only while driving, when I was supposed to turn it off. Told my Doctor this, but he went ahead and scheduled the surgery for the permanent stimulator, with full knowledge that it ONLY helped me when I drove. He probed and probed away until finally, he gave up and took it out. One more scar for nothing. So pain meds it is. A daily dose of MS Contin 30mg x 2 and Loritab 10 for breakthrough pain bid also. I have been on the same dosage for 5 years now. Still have a lot of pain when I actually do something but I really don?t want to up the dosage for fear that NOTHING will help me in the future given my age.

Then came my battle of trying to get SS Disability. Along with this the ?BAD? throwing up was happening about once every three months or so that no one could figure out. Hospital stay after hospital stay with all tests being? NORMAL. Then again, something new. When I was finally able to take a bath again after back surgery I started having strange reactions to the hot water. I would break out in hives, streaked with red and white stripes, itch like crazy and become extremely swollen. Back to the doctor I go. And this was a new doctor I had to find because my trusted GP went to work in the ER full time! :-@! Thankfully he was also very understanding and listened to me. He put me on Vistaril, which did help with the hives but nothing else. As time went on more and more symptoms relating to heat would pop up. When it got to the point that I felt like I couldn?t breathe, I had to investigate further. He then put me on Amitriptyline. This didn?t do a thing and my symptoms were getting more intense, so I quit taking it. Then my Doctor got hit by a car as he was riding his Bicycle and died, what a tragedy. So my search for yet another new doctor was number one on my list yet again.

Now I can barely get through taking a lukewarm shower. The minute I get in the shower my stomach distends and I look like I?m 9 months pregnant. It?s feels hard and I can?t suck in at all. Sometimes it goes away in an hour or so sometimes it stays until I lay down for a while. From there I try to dry my hair and put on make-up with a box fan on high and the A/C down to 59 blowing directly on me but I keep sweating and sweating so It?s fruitless!! My left eye in the outside corner is nothing but scar tissue now from my eye leaking so make-up won?t stay on anymore. Who?d have thought taking a shower would be something you dread the most in a day? At this point I couldn?t even stand to go outside in the heat because the moment I did my heart would start racing, I?d start swelling up, breathing would get very labored, I?d start getting very dizzy (AGAIN). My head would start pounding and if I didn?t get back to the cool I would start throwing up over and over (normal throw up).

I found my current Internal Medicine Doctor. He sat down with me and listened and told me that we?d get to the bottom of this. It sounded like an Endocrine problem and he ordered a 24-hour urine catecholamine test. The results for this were out of the park. I think 300 was considered high and mine was 700 (the only part I remember). He also ordered an EKG and everything was Normal yet again.

He then sent me to an Endocrinologist with those test results in hand. He also told me we?d figure this out. After 4 more 24 hour urine tests, we could never duplicate the results. Normal, normal, normal again. He thought I might have a Pheochromocytoma or tumors on my adrenal glands. I then had a CT?s with contrast, nothing showed. He told me that if it came back clear we?d do a PET scan. But that wasn?t what happened. He ordered ANOTHER CT with contrast, this time chalk to drink, and nothing again. And my symptoms were getting worse. He started me on Spironolacetone and Coreg after Diltiazem ER 120mg bid and Doxazosin 2mg bid never lowered my heart rate when I was moving one bit.

I was getting down and going stir crazy because I couldn?t leave my house in this Mississippi heat. But then ANOTHER new symptom started. I keep my house between 62 and 65 degrees. I would get up out of the bed, turn around to make it up get flooded with dizziness, go put the dishes in the dishwasher and throw the clothes in the dryer. At this point my hair looked like I had just gotten out of the shower I was soaked with sweat and my heart is RACING by simply doing menial tasks. Whatever I?ve got going on is progressing incredibly fast at this point.

I called the Endocrinologist, they tell me there is nothing more he can do and he sends me to an Allergist/Immunologist. Tells me it must be something in ?my environment?. I say well if that?s the case its every single ?environment? I?m in! I?m getting more and more frustrated but I keep my cool. I get to the Allergist, he does an ice test and some blood work, and everything is NORMAL. I go through the spill yet again of everything that is going on. He tells me he wants me to reproduce my symptoms. He wanted me to go outside and mess around until I was full blown symptomatic (which wouldn?t take but about 5 minutes) but at that point I never know if I can get my headaches under control again soon or not so I told him I better come back and do that and bring my husband just incase I can?t drive myself home. He gave me an inhaler and an Epi-pen.

He called me back the next week and I went back to see him. The night before I was flipping channels on the TV and I ran across the show ?Mystery Diagnosis? and something they said about heat caught my eye, well ear, so I started watching. The episode was entitled: The Woman Who Kept Falling Down? This was SO ME! Except that I don?t usually pass out. I get VERY dizzy but I?ve only actually passed out twice. Once during the first dizzy/hot episodes in my early twenties and a second time about a year and a half ago after coming back from eating with the girls one night. I ordered fish and an apple martini. Shortly after I started eating I had this strange feeling in my jaw, it kept getting stronger and stronger, it really hurt. In fact I just figured out the word to describe that pain. You know how it feels when you eat one of those ridiculously sour candies? Well it felt like that x 1000. It got so bad I had to leave. I thought I was having an allergic reaction to the fish I had eaten for my entire life. I got home; walked in the door, told my husband I feel weird and hit the floor. He swore I?d drank too much and passed out, not hardly! I didn?t even finish my second martini! Now I know why I?ve never been able to handle minimal alcohol! Back to the Allergist, when I got there I told him about the show I had seen the night before and how it sounded like me minus the throwing up. I told him it was about ?Orthostatic Intolerance?. He told me he hadn?t heard of it, went and got his laptop and looked up the show on you tube. He watched a segment of it and sent me home saying he was going to study up on it. He didn?t want me to have to go through the going outside ordeal if this was it. I waited one week, two weeks, three weeks and finally started calling his office. Four times to be exact and he would never call me back. So I said you know what him!

During this time I started paying CLOSE attention to my body upon sitting and standing, relating to my position as the show had spoken of. I called my Endocrinologist back again. He told me to go back to my Internal Medicine Doctor and get him to do a Holter Monitor on me for 24 hours. So I did this. Sure enough, the only time my heart rate was normal is when I am laying down or reclining. When I?m sitting it is anywhere from 125-145, when I am standing and doing something like folding clothes it gets up to 180. If I go outside to sweep the tiny concrete porch it has gotten to 211. I purchased a strap and watch heart rate monitor when I saw I was going to have to figure this out myself! I noticed things like when I took my necklace off at night, get something out of a high cabinet, any kind of reaching up my pulse would jump to 170 and I?d get EXTREMELY dizzy, But thankfully the Holster Monitor showed this too!

Then my Internal Med Doc sent the results back to my Endocrinologist (as he ordered the test) who then sent me to a Cardiologist. When I got there I went through the whole story yet again with his nurse practitioner first, who told me ?we will figure this out for you?, he?s one of the smartest Doctors I know. She took my pulse sitting in the chair it was 120. I then said jokingly, ?Now shall I stand up and you take it again?? She said actually yes. I stood up and immediately it was 160. My BP was 120 over 80 sitting and standing was 120 over 100 that time. It took her three different devices and many tries to even get my pulse it was so faint that day. I said you know it just dawned on me that this is probably why the EKG?s I?ve had have been normal, I?m lying down when they do it! The Doctor came in the room; I went through things with him again. He said it sounds like you?ve got something called ?POTS? - Postural Orthostatic Tachycardia Syndrome. It?s a form of Orthostatic Intolerance. When I heard that I started tearing up. I know I sounded like a crazy person because I said. I saw a show on TLC ?Mystery Diagnosis? about that the night before I saw the last Doctor. I believe God showed that to me, because I never watch shows like that and there it was! He just smiled and went on explaining it to me. They had me do an EKG lying down? Normal. Then had me stand up. The machine went crazy, little lines back to back. So all I had to do was stand to confirm what he said. They also did an Echo, which he said looked normal but it was hard to tell because my heart was beating so fast so we may have to do it again. He told me there is no cure; you have to treat the individual symptoms. He put me on Inderal and Allegra. They wanted me to call them in two weeks and let them know how it was working. The Inderal HAS slowed my heart down but it?s making my headaches worse. It also still jumps up 30-40 beats when I stand; it just starts at around 80 now. My dizziness seems to be better at times while I?m in the house. I went out last night and after about an hour the most intense dizziness yet started. The best way I can describe it is it feels like I?m in a different world with kind of an energy enclosing me. I?m really out of it, and it feels like someone is trying to pull me through the ground. Kind of like the old ?Gravitron? ride but instead of the pressure pushing against you it is pushing you down. That?s the best analogy I can give and it seems to be getting worse. All I can do to make it go away is to lie down and my body will sleep for 12 hours after a heavy episode. On regular symptom days I?m exhausted yet I have to take Lunesta to sleep at all. Most nights waking up about 2 A.M. to take another.

I then asked when did I get to be treated for the other symptoms? They told me I?d probably have to go back to the Endocrinologist to get treated for the other symptoms. I said okay and called his office. He said he?s never even heard of it, he would look it up and get back with me. Five days go by and I?ve heard nothing so I call back. They tell me it?s not an Endocrine disease so there is nothing they can do. Just when I saw a light?

I had an appointment with my Internal Medicine doctor the next day for my usual every other month pain management. After two minutes of sitting in there of course I became soaked with sweat, my head started to pound etc, etc, etc and I lost it? I felt like no one was going to help me with the IMPORTANT physical symptoms that made me feel like a FREAK! It?s bad enough that all of my friends have had to change the way they do things for me and make anything we do together at night. It?s bad enough that even when it is night ? of the I?m still soaked with sweat in no time and usually start puking before we even get going, (we ride 4-wheelers, I?m on back with my husband). It?s bad enough that I have to pay for it back-wise for days but with this it puts me out even longer, yet I still want to go??! Even though my legs get so swollen they?re literally about to pop from the heat coming off of the 4-wheeler?SOMETIMES if we keep moving rather fast and cool air is blowing on me I can make it through without throwing up (although I?ve only had two puke free nights this entire summer). It?s bad enough that ALL EYES ARE ON ME when I?m soaked with sweat, throwing up over and over with my head pounding and so dizzy I have to hold onto my husband. Even though I load up on medicine before hand and pray I can get through a few hours without being ?THE SICK ONE?, The BURDON that everyone has to contend with?

I printed out all of the info I could find online and brought it with me for my Internal Med Doc to read. He told me he would be happy to take on this challenge. I would just have to be patient and it will take time to get it right. That?s what an Internal Medicine Doctor does, we take care of everything in the body but this was new to him too. I felt like the weight of the world had been lifted off my shoulders. To have such an understanding, caring Doctor who is willing to take me on is such a blessing. It?s also a perk that he is local with my back bothering me so when I have to travel.

It?s amazing to me how many things that I?ve been diagnosed with or have wrong with me are related to this:

? IBS and Chronic Constipation

? Interstitial Cystitis, = ?Bladder Dysfunction?.

? In the last month this strange hard sleep feeling has been almost constant at the top of my jaws by my ears on the inside, and at times it gets stronger like the really painful sour feeling = ?Myofascial Pain?.

? I?ve been diagnosed with Moderate Carpel Tunnel, my body has involuntary little jerks, and I get Shingles = ?Neuropathic Pain?.

? I?m down to only doing Pilate?s or all symptoms activate = ?Exercise Intolerance?. Even just sitting upright in a chair I get at the least clammy but if I stay I get soaked with sweat.

? I?ve noticed when I have a big issue with anyone or anything that is stressful I start throwing up again and again lately = ?Anxiety?.

? When I get flushed I?ve recently figured out, my body temperature actually rises. My whole body turns red, especially my face and it?s very hot to the touch. All of my life I have always ran a low-grade fever (99.something). Now I know why.

? For as long as I can remember every Doctor I?ve seen always asks me ?are you nervous? because my heart rate has always been high = Tachycardia

? I?ve always said, ?I?m not a white girl, I?m purple. And when I stand up I get red and white polka dots?.

? My feet, hands and nose are FREEZING most of the time. It doesn?t bother me but it does my husband. I do have the ability to get cold at night in the A/C, but in the daytime no matter what the temp is the colder the better.

? I?ve noticed lately at times my spelling is off the wall i.e. loose I?ll spell Luce???

? Every time I have to give blood it takes a slew of nurses to find a vein. If I have to have an IV 9 out of 10 times the vein blows. When I have to get blood taken if it?s more than one vial they have a lot of trouble getting the amount they need, sometimes even one vial takes a while.

? My feet, toes, hands and fingers are numb/tingle a lot of the time.

? When I stand up I can barely feel my pulse.

? ?Low back pain, neck and shoulder pain? = It feels like if someone could reach underneath my shoulder blade and pull everything out I would be ok.

? When a migraine starts of course, noise and light sensitivity is strong. They are happening a lot again. And it?s a definite if I go outside in the heat.

? I?ve had irregular and heavy periods for a long time now and things are DEFINITELY a lot worse during that time which is every two weeks.

? Been diagnosed with TMJ, Degenerative Disc Disease, Spondylosis, Scholiosis and I was born with an extra vertebra that pushes on nerves creating more problems I?m told = joint pain.

? Lately I?ve started having trouble swallowing. I have to get a drink to be able to swallow, that?s a scary feeling.

? My step-daughter asked me if mood swings was a symptom? I always thought my actions were equal to the way I am being treated, although I know I should rise above but maybe not? I do know that ?little things? do affect me a whole lot, no matter how hard I try to not let them bother me.

? I have red splotchy patches all over my arms and a few on my chest that never go away now. They?re a brighter red when I get hot or flushed.

? If something hot touches me, I go outside or am in a hot environment my legs; feet, hands and wrists swell tremendously and turn splotchy. Even my laptop on my lap too long starts a full episode. If I?m inside I usually don?t swell unless I do something strenuous or over do it.

? Don?t know if this is valid but I?m writing everything I can think so I?ll add this too. For as long as I can remember every waking moment of the day I have a high pitched frequency singing away. The pitch and volume may change but it?s always there. Also sometimes when I turn my head it sounds like someone jingling change in their pocket.

? I have to carry my little fans with me wherever I go. When I do have to get out and do some household shopping I?m ALWAYS throwing up, head pounding while driving mind you, by the time I leave. Dripping wet with sweat, red as a beet. I keep a ?throw up bowl in the car. I?ve also had to put plastic bags in my big purse and discretely throw up along the way at times? Thank God I?ve got the cart to hold on to or I?d probably be in the floor. All of this complaining but I do have a positive thing to say. I have only had the ?BAD? throwing up three times in the last two years and I?m VERY thankful for that! I?d rather have back surgery again over that.

Back to my last Doctors apt. I went in armed with all the paperwork so he could learn about it too. He started me on Atarax?. When I got it from the pharmacy I got the generic brand and saw that it was the EXACT same thing as Vistaril that I tried for over a year and all it did was help with the hives. So I called him Monday morning asking about this and he wants me taking 50mg four times a day for two more weeks rather than 25. I can still see zero difference, except I seem to be getting more ornery! He also gave me Midrin for my headaches. That?s it. So I?m still the freak with the sweating, vomiting and headaches being my main concern. If I could get these under control then it would be so nice to conquer the others, like being a purple person.

I would LOVE any advice anyone has as for any treatments that work. We?re all in the dark here and I desperately need the light.

Thank you for listening?

Leslie Precht

Edited by Leslie
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Dear Leslie,

I would like to read your story, but I get lost when I try to read it. Is it possible to break up the narrative into more reader-friendly paragraphs? Welcome to the Forum.



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So sorry you are suffering so much! It sounds like you are definitely having a rough way to go. Have you seen an autonomic specialist? It takes forever to get in with them, but they can bring a lot of insight to the table. You will find a lot of support here. GI complaints are very common and while yours sound a lot worse than most you are by no means alone. Check out some of the advice on the dinet web site, too. Hang in there!


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Hi Leslie,

Wow! You've certainly been through the ringer. I'm so glad you found a local doc who could diagnose you and who is willing to treat you. I still think it might be valuable for you to go to a dysautonomia specialist. There are lots of other conditions that can cause dysautonomia, and those centers should be able to rule out underlying causes. The thing is, if another disorder is causing your dysautonomia/POTS then you might benefit from treating that underlying disorder. I went to Mayo in Rochester, MN, to their autonomic neurology dept. They were so thorough and answered all my questions. I have flushing, elevated BP on standing, cold extremities, nausea and vomitting, etc. Have you tried the non-pharmaceutical treatments like compression hose, lots of salt and fluids, abdominal compression? I haven't tolerated any meds so far, but the non-pharmaceutical treatments really help.

I hope you continue to get more answers!

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I know I may sound like a broken record on this forum, but when I see a certain "cluster" of symptoms, I always want to remind people to be checked for a pheochromocytoma. You have headache, sweats, elevated b/p, an vomiting--all classic signs of a pheo. Also, you said your 24-hour catecholamines were elevated, which actually IS DIAGNOSTIC for a pheo. I would think a good doctor would at least do more imaging for a pheo.

I can also identify with you on the heat! I live in Louisiana, and have been under strict air-conditioning since May. When our electricity might blink off, I PANIC! But I have my back-up a/c plans--car first, generator for a window unit that would keep one room cool, or go to our business in town that is under a different electrical supplier! I also swell horribly when exposed to anything above 79F, but I am different in that I don't sweat, so that contributes alot to my heat intolerance. But, in the long run, I don't know why I am so hot all the time.

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Thank everyone for taking the time to read that LONG story. I didn't know I had that much to say! I have been tested for pheno.. another negative. My endocrinologist thought that may be it or he thought I may have had tumors on or around my adrenal gland. We did a CT with contrast first, nothing.. another CT with the chalk stuff and contrast again.. nothing. Although he told me if nothing showed on the CT we would need to do a PET scan he opted for the same thing again only with the chalk. I thought it was bogus too!

I'll probably end up in Nashville at Vanderbilt, closest place for me. I've had so many tests and nothing came out positive I have no idea what they all are. Tried to go ride last night and of course about an hour into it I'm down for the count. Had some of the most intense dizzyness I've experienced so far.. It's getting worse.. Best way I can describe it is it feels like I'm in a different world and something is trying to pull me through the ground.. Strange but that's how it feels to me. Kind of like the old Gravitron ride at the fair ..

When I wrote this in MS Word I did format it with paragraphs but it didn't transfer. I'll try again.

I've been drinking gatorade and it does make me not quite so tired I believe but I'm concerned with the calories so I bought the mix and water it down. I've purchased the powerade zero but they don't make lemon lime and I've really been on a citrus kick lately. Only wanting to eat and drink fruit products.. The gatorade zero is such a tiny bottle it's too expensive for my drinking habit!

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Ok, got it double spaced now. Hope that helps, my eyes get crossed reading long text too! Added a few missing thoughts too.

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Hi Leslie. (I have really bad brain fog right now, if any of this is mis-spelt or wrong phrasing/words etc, hope you understand it!O

What you've gone through sounds terrible and I'm so sorry you had to experience all this before you found out what it was. Like the others have said, I would recommend you definitely see a dysautonomia specialist, mainly because they are normally very sympathetic about the way you feel compared to some other Doctors. I would also suggest uou gey checked for Ehlers Danlos Syndrome, as your back/joint pain seems to correspond with the symptoms that you have too.

Please keep writing to the group if it helps you, we all understand!


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Hi Leslie! Welcome to the forum! And believe me, though the symptoms and intensity may vary, we all know where you're coming from.

I'm like you, in that I have been diagnosed with interstitial cystitis and irritable bowel syndrome (though they now are calling it inflammatory bowel disease, even though I've never had bleeding.) I KNOW that they're both nerve-related. I also have migraines and polycystic ovarian syndrome. Like you, I'm a collection of chronic complaints! :rolleyes:

That's great that you have a doctor who's so willing to work with you. Seeing an autonomic specialist should help, too. I moved not too long ago, so I'm between doctors right now.

Have you ever tried an SSRI antidepressant? I'm just asking because Paxil has been an IMMENSE help to me -- not for psychological reasons, but for physiological. When I don't take it, my hands and feet tingle, my pulse gets out of control upon standing, I have severe nausea, vomiting and diarrhea, and I have constant adrenaline rushes that feel like a panic attack that won't end. Paxil seems to "turn down" the volume on my autonomic nervous system. Off of it, I can't function. On it, I have a mostly normal life (though I sweat a lot, just like you, and you're right -- it's embarrassing!)

Obviously, I'm not a doctor, but I just wanted to mention SSRI antidepressants because it seems like we have a lot of the same issues. It's something you might want to ask your doctor about. I know that a lot of other people on this forum also find SSRI's or SNRI's very helpful.

Good luck, and once again, welcome on board!


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Mrs. Burschman,

Thank you so much for the welcome and the suggestion! I will definitely ask my Doctor about it Monday. I used to take one long ago and it helped immensly with the shingles but I stopped taking it, Celexa I think it was. Willing to give anything a try! It's great to know you can now lead a mostly normal life! That gives me hope! I guess if nothing gets better within a month or so I'll start the process to go to Vanderbilt.. Traveling is such a struggle I'm trying to avoid it! Hope you continue to have success and thank you again!!

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Hi Leslie,

Thanks so much for making your post much more readable, it really helped! I want to give you a very warm welcome to the Forum, and know that this is a great place to come when you need support and answers. It looks like everyone else has covered the comments I would have made, which is basically directed toward getting yourself an appointment at Vanderbilt with one of their specialists to get the most accurate diagnosis you can. That way, you're working with doctors that are familiar with dysautonomia who can set up the best treatment plan for you.

You have a lot of symptoms that many of us have here, but yours certainly sound extreme and you've had a long, hard haul of it. I'm sorry you've been suffering so with so many maladies. I'm wishing you the best of luck in unraveling everything that's going on with you so that you can live your best life possible. Rest, eat a lot of salt, drink tons o' water and electrolytes (NUUN is a very good electrolyte tablet that you just drop in your water). And keep in touch - we'll be thinking of you and hoping you get the answers you deserve.



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  • 2 years later...

I'm sorry this has happened to you but you are not alone. My Dysautonomia symptoms started with migraines, flushing, food & environmental allergies, & I couldn't sweat. Later I changed to flushing & sweating, seizures, exhaustion,shaking, insomnia,IBS, & the list goes on.

I reacted to every medication I was given until a neurologist gave me Neurontin. That helped migraine pain & I could sleep, it also helped with the flushing & anxiety. It wasn't a cure but just getting a nights rest helps me cope with things better. I've had Dysautonomia for approx 25 years & Neurontin/Gabapentin & Ativan are still the only meds my body will tolerate. Hope you get help soon.

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