sandymbme

I tried a dairy-free diet, which I am relieved beyond words made no appreciable difference whatsoever! Having already been forced to go strict gluten free after a positive Celiac diagnosis, the thought of giving up my beloved cheese is more than I can bear! I have improved quite a bit on a gluten free diet, much to my dismay! While I have not gained any weight back, I seem to have at least stabilized and stopped losing weight. I had hoped the gluten free diet wouldn't make a difference, so I could justify continuing to eat all my favorite things. Sadly, it helped a great deal. Sandy

I just had a six day inpatient stay in the hospital due to a "cervical-spinal migraine". Or at least that is what they called it! My initial POTS diagnosis came about because of a 9 month migraine that adamantly refused to respond to conventional treatments. To this day, migraines are one of my biggest issues, and my most difficult symptom to manage. Sandy

For what it's worth, my "normal" body temp is around 97.6 or so, and I, too, am always cold. Like many others, I have always chalked it up to dysautonomia... Sandy

Good to hear from you Ernie, especially with positive news! Sometimes it seems that there is no hope, because the only folks who post (it seems) are sick. The healthy ones are just too busy living life to the fullest to drop in and say "hi"! I see a local (Charlotte, NC) headache specialist tomorrow, and Dr. Grubb next month, and physical therapy is at the top of my wish list. Seems to be the only thing that has given me a measure of success, at least for a little while! I sincerely hope you continue to improve. And how wonderful that the activity responsible for your improvement also promotes closeness between you and your husband, talk about ideal! Sandy

Anne MacCafferty-Dragonriders of Pern And you get the Grand Prize.....my utmost esteem for your literary knowledge!

So happy that you got a quick response! Hope it gives you the help you need! Sandy

I can't say whether that is POTS or not, (as I am about 12 years of education shy of a medical degree! ) but I would say based on your records that it deserves a second opinion, at the very least. It seems you have already learned this doctor leaves much wanting. Glad to hear you are following up with someone else. Leaving you unsupervised for a year with a medication that is not working well for you seems completely asinine to me! I hope you find the answers you are looking for! Sandy

Thus far, it would appear that I don't have Brugada Syndrome, which Dr. Grubb told me he thinks is just a variant of Long QT syndrome. He implanted a loop recorder to track my heart rhythms and so far I have had a lot of tachycardia (which is NOT a surprise!), but no arrhythmia. If we don't see anything in the next year, he will remove my "Reveal" monitor and consider me negative for Brugada. I have family history, so I was high risk for it, and the symptoms of POTS can be very similar, which is why when I mentioned the family history to Beverly, she consulted with Dr. Grubb right away. Brugada is extremely dangerous, typically causing heart attack and death by one's 40's. (And I have a whole string of male relatives who did in fact die young, of this condition, so it was important to be able to rule it out.) No idea what cause my POTS. I can't trace its onset to a virus or specific trigger. I had syncope episodes during aerobics workouts in Gym when I was in high school. Go figure, a bunch of rapid positional changes would make me drop in a matter of minutes! But my doc at the time just wrote me an excuse to get out of gym, because by the time I would get to the hospital (and had been laying down for several minutes) my vitals would be fine. I wasn't actually diagnosed until I started having horrific, untreatable migraines 15 years later. Nothing worked, not triptans, painkillers, or NSAIDs. I had a migraine that lasted for 9 months straight, and ended up at the Cleveland Clinic in absolute desperation. It was my neuro there who noticed my vitals were really strange, super high heart rate, super low blood pressure. Migraines are still one of my hardest symptoms to manage. At any rate, they did all my testing, and I failed the TTT with flying colors. I eventually started seeing Dr. Grubb for my POTS management, because the doctor at the Cleveland Clinic seemed to focus solely on the number of syncope episodes I was having, which at the time was not my chief complaint. But I still see Dr. Mark Stillman (the neuro) at the Cleveland Clinic for my migraines, he has a really good understanding of POTS, and how it complicates treating my migraines. Sandy

I am a patient of Dr. Grubb's, and I too, was told it would be a 1 year wait to get in with him. So I opted to see Beverly Carabin, his NP. She is awesome! She will present much of the same info he does, participates in all of his studies, so she is completely up to date on everything he knows. She absolutely consults with him, especially if you have an area of serious concern. I was very flexible with scheduling, as I wasn't working at the time, and only live about 2 and a half hours from Toledo, so I was able to take a cancellation and I saw her within two weeks. I have a very rare heart problem that runs in my family (Brugada Syndrome), so she took my case to Dr. Grubb, and I ended up seeing him just a month later. I would definitely encourage you to take an appointment with Beverly, they really are some of the world's top experts on POTS, and genuinely nice people. That being said, be advised that their patient load is staggering, and getting a response from the nurses, or Dr. Grubb himself, can be very frustrating. Also, expect a LONG wait in the waiting room, regardless of who you see. The wait *****, but you will appreciate it when your turn comes and you get the undivided attention of Beverly or Dr. Grubb for literally as long as it takes. Dr. Grubb has spent at least an hour, sometimes two, with me every time I have seen him. I have never seen a doctor take so much time, and express so much compassion. The validation of what we are going through is worth the trip all by itself. Hope this helps! Sandy

Funny, Doc, I don't seem to have any of these problems in the higher gravity of my home planet, Pern... Sandy (extra credit if you recognize the planet name from the books, gatorade shots to the first correct guess! )

I will stop by the nearest shelter on the way, and bring dogs and cats to kiss and cuddle and laugh at. I honestly think my cat is the only thing keeping me going on the bad days, and a source for endless humor on my good ones. Sandy

Interesting article, Julie. I am not a CFS patient, but my PCP did some viral testing on me late last year. I cam back with positive results for Epstein-Barr and HHV-6, and elevated mycoplasma pneumoniae. But even my Doc acknowledged that they don't really know what that means! Sandy

My neuro at the Cleveland Clinic told me that my POTS made me prone to vascular migraines, I can get them near daily when I am going through a bad patch. I don't respond to any of the triptans, and like others have said, short-acting meds trigger rebound headaches. I actually use sub-cutaneous injections of DHE (dihydroergotamine) which is a vasoconstrictor. I have also been given caffeine drips in the hospital, but because I the way it makes my tachycardia soar, is not a treatment I use at home. Sandy

I spoke with Dr. Grubb's office this afternoon. Of course, the person who normally reads the reports from the implanted loop recorder is on vacation! But the nurse told me they were having the printout faxed over by Medtronic, and that Dr. Grubb would look very carefully at it. They want to add another SSRI, which I am a bit leery of, just because I had liver complications with cymbalta. The nurse also wants me to come in and be seen, and wonder of wonders, they actually managed to find an appointment time in April! To respond to some of the questions, I have been on the 10mg dose 3x daily of midodrine for about a year, give or take. I have been on florinef in the past, and would take it is there were no other option, but it triggers fierce migraines for me, it's not a med I tolerate well. I get 1 liter of regular saline via my port/cath 3x a week, although lately we have been doing it daily. Not only did I have the weird, convulsive syncope, but I am having FAR more syncopes than I ever used to. I have at the very least, near-syncopal episodes just about every time I stand, regardless of how carefully or slowly I try to move. Whereas just 6 months ago, I had a syncopal episode maybe twice a month. So it's a very big change. I don't know if my newly diagnosed celiac disease is making things worse, I have read that celiac can interfere with the absorption of fluids and bile salts. I will definitely have a lot of questions for the good doctor when I see him! Thank you all so much for the concern and the comments! Sandy

Having had a lumbar puncture last week, and a resulting spinal headache that lasted about 6 days, I can promise you that you do NOT want to volunteer for a lumbar puncture! I have had a total of 6 of them in the last 3 years or so, and have had resulting spinal headaches twice. And it is my experience that the worse your overall POTS symptoms are, the more it compounds the spinal headache. (Which is also positional, worsens upon sitting up or standing.) I have noticed issues with my skin of late, it seems to be much more fragile than it used to be, and thinner. But I also had a hysterectomy about 2 months ago, so I am not sure if this is a POTS issue, or a hormonal issue. In any case, I have been slathering on the moisturizer, and hoping for the best! Sandy

Thanks for all the replies. I was just exhausted today, slept most of the day. I did not actually hit the floor, or at least I don't think I did. I clearly remember panicking because my face was in line with the post of my bed and I was about to fall into it face-first. But I didn't actually hit it, and I don't remember getting off the floor. I have been having way more syncope episodes than ever before, and my BP has just been lousy. Even immediately after doing IV fluids this morning after I posted, it was still only 90/60. And I do always take the midodrine with plenty of water. I have been skipping the atenelol to try to bump up my BP, but that doesn't seem to be helping either. I will definitely call the doc tomorrow. I slept through office hours today so I missed that one! And I actually have an implanted heart monitor, the article looks interesting, will down load and see if anything funny turned up.... Sandy

Just a quick note, I had my evaluation and testing done at the Cleveland Clinic. Everyone was very nice, and very thorough in the testing. Dr. Fouad (sp? brain fog, forgive me!) was very nice. I was an out of town patient (from Columbus, Oh) so they scheduled everything for one long day of testing. I have also been seen by the GI docs there, and had very good results. I eventually moved my POTS management to Dr. Grubb, but still see docs at Cleveland Clinic to manage neuro and GI issues. Just call Dr. Fouad's office, and they will get you to a triage nurse who will determine who you need to see. And as long as they know you are from out of town, they will try their best to accommodate your schedule. Sandy

So I have been having syncope episodes, or near-syncope episode just about every time I stand up lately. My blood pressure has been running really low (80/60 at the doc's office yesterday seated, and we opted not to do standing so I wouldn't risk falling on their hard linoleum floors!) At about 5:30am this morning, I got up to grab some coffee, to try give my BP a bump up, and when I got up from a seated/reclining position in bed, everything started going black, lost control of my extremities, saw shooting stars, all my normal stuff. But in a strange new twist, I hovered on the edge of conscious and unconscious, my body convulsing, for a few seconds. (no more than 10-15 seconds, this didn't last very long) I could feel my arms flopping around, but had no control, and was desperate trying to move because I was next to my bed, facing one of the posts on the bed frame, and was terrified I was going to get nailed in the face with the post. (I managed to avoid giving myself a black eye, so yay for that!) So, does this (the convulsions) happen to anyone else? It was not quite a full syncope episode, I didn't quite pass out completely, but came about as close as you can. Should I be concerned that it may have been a seizure? I have had seizure activity pop up on an eeg before, but that was written off as being the result of being on narcotics, as the test was given while I was inpatient at the hospital for severe migraines. To my knowledge, I have never had a seizure. But this kind of freaked me out! Sandy

Hope, As far as long-term prognosis goes, the short answer is: nobody knows! The longer answer is, it really depends on each patient. There are some people who are afflicted with POTS in their teens, who recover in their late teens/early twenties, and never have a problem again. There are a lot of people like myself, who had problems in their teens, were healthy through their twenties, only to have a "relapse" in their thirties, that in many cases is far more debilitating than when they were younger. At this point, the research just isn't there to be able even guess at why that happens for some and not others. The good new for your son is that they are researching pots a lot more thoroughly now, and hopefully will benefit from that research. While I remember always being kind of prone to dizzy spells, I only had a few syncope episodes in my teens, and really didn't have a ton of difficulty with some of the other problems that can pop up. When I hit round two with POTS, starting on my 32nd birthday (talk about a lousy gift!), things were much more serious, affected many more areas of my life. So keep in mind when you read this forum, you invariably only hear from the folks who are sick, it can give you the impression that there are no success stories. But in fact there are plenty of healthy folks with POTS, they are just too busy having a life to post very often! And FYI, you should ALWAYS discuss any diet or med changes with your son's doctors first. Probably an unnecessary caution, but it is vitally important to managing your son's condition that his medical team know everything that's going in to him, from diet to supplements to meds. Good luck! And this forum is a godsend for all of us. Sorry for the events in your son's health that led you to us, but so very glad to help in any way possible! Sandy

I didn't get any more migraines than I usually do when I was on mestinon, buts I definitely have more migraines on my bad POTS days. My migraines were actually the first presenting symptom I had that led to my diagnosis. I had a migraine that last for 9 months straight, really thought I was losing my mind. Dr. Stillman, who is a neurologist at the Headache and Facial Pain Clinic at the Cleveland Clinic, noticed my unusual vitals (high HR and low BP) and sent me for a TTT. Sure enough, I flunked! He explained to me that "vascular" migraines are common in pots patients, due to both the low blood pressure and the tachycardia. He recommended vasoconstrictors like DHE for rescue meds. If you keep getting them, definitely follow up with your neurologist, or get a referral to one. Sandy

That is just awesome! Thanks for the lift Firewatcher! Sandy

Just wanted to throw a word of caution, as far as the SSRI's go. You may start the medication and think it is not having a tremendous impact. A lot of their effect can be subtle. But if you stop taking it (which you should never do abruptly! always discuss with your doctor/health care provider about how to safely taper off the med.) you will suddenly realize it in fact was making things significantly better. And unfortunately, most of the drugs in this class are not as effective when you resume treatment with them. My dad is a pharmacist, and this was the exact caution he gave to me when I started taking cymbalta. The med helped far more with my widespread pain than I even suspected, until complications with my liver forced me to stop taking it. I am currently taking a teeny-tiny dose of prozac, and while again I don't really notice much improvement, it hasn't caused me any major side effects, and I have already learned from painful experience how awful things got w/o an SSRI. And as far as your nurse therapist goes, I don't think you could have seen anyone worse! IF your problem is anorexia, (which is a BIG "if" in my mind, there is an enormous difference between the starving myself that resulted in weight loss when I was young, and the recent weight loss issues I have been having due to a variety of GI issues!) you need to see someone who specializes in eating disorders. You mentioned something in passing about a program in Cincinnati, was this the program at Christ Hospital? (I grew up in Cincinnati, so I am familiar with it.) They have an excellent eating disorders unit there, really top notch. If you don't want to go the inpatient route, I am sure if you call them they can recommend a good therapist in your area. However, I don't think you have had anywhere near enough GI/POTS evaluation to rule out your weight loss issues from being strictly medical in nature. If you are in the Ohio area, I would STRONGLY encourage you to go to the Cleveland Clinic and get a proper evaluation. I was dx'ed there, and while I eventually switched my POTS management to Dr. Grubb in Toledo, the Cleveland Clinic is a stellar resource for evaluation. Hope this helps! Sandy

I had endometriosis on my ovaries, as well as family history of ovarian cancer, so they took my ovaries at the same time they took my uterus. I was already hospitalized at that time for GI issues, the hysterectomy was an emergency procedure. So I really can't tell if I had a bad flare from the surgery, because I was already doing so poorly. (Maybe that is the way to go? Schedule procedures for when you are already doing badly?) I had ovarian cysts prior to the surgery, and was just beginning to develop fibroid tumors, so it was kind of inevitable that I would have it eventually, anyway. I can't really tell if things are any better, because I am still in the middle of a very bad flare. I did start hormone replacement therapy, to try to keep things relatively normal from a hormonal standpoint. I was really leery of HRT, but my doc said that especially because I am so young (35) that it would be brutal to deal with the worst of menopause, on top of my POTS and Celiac disease. Sigh! Sandy

Unfortunately, I relate to a great degree! I have widespread pain, just about exactly as your son described. It is part and parcel of my POTS. When I am having a bad flare of symptoms, my pain level usually skyrockets as well. And I haven't found a whole lot of success dealing with it. I experienced some improvement after physical therapy, and sometimes get a measure of relief from narcotic painkillers. Over the counter stuff like tylenol and advil don't ever put a dent in the pain. The fluid loading (gatorade) can help, and i sometimes find a soak in a really warm bath soothing. I would contact his doc come monday if he hasn't improved. And hang in there! Sandy