sandymbme

I was diagnosed by Dr. Mark Stillman at the Cleveland Clinic (he's the director of their headache and facial pain clinic, and a heck of a nice guy!) as having "Chronic Daily Headache" that BECAUSE of my POTS did not respond to triptans. So we use a combination of vasoconstrictors like DHE (dihydroergotamine) and occipital steroid injections and anti-nausea meds. I have gotten a lot of relief with this combination. But after 4 years of pretty good results, I am running into trouble again. Sigh. So I will be scheduling an appointment with him ASAP. But daily headache is real, does exist, and can be treated. Good luck! Sandy

Just a thought, you might ask your pharmacist. Sometimes they are better informed about discount programs. And a word to the wise, Mestinon really helped my POTS symptoms for the most part, but I couldn't tolerate it because of the GI side effects. They had to take me off of the drug after less than 3 months. Good luck! Sandy

A LOT of folks have GI issues. Some can be linked to your POTS, or in my case I found out what I thought was related to my POTS was in fact Celiac disease. But the bottom line is, unless the trip is absolutely too difficult to manage, I would say to go. Continuing follow up care is how you stay healthy, and make sure they have you on the right regimen. Your GI symptoms should be looked into as well, as that can be due to any number of things, some POTSy, some not. Hope this helps! Sandy

Glad you found a good fit! Having the right medical team makes a huge difference in my overall well-being. Good luck! Sandy

I usually limit myself to no more than one or two caffeinated beverages a day. Although admittedly, when I can get my hands on Pepsi Throwback all bets are off! (lol) But it is a mixed bag for me. I don't really respond very well to triptans, so sometimes a bunch of caffeine is just what I need to kill a monster migraine. (I have literally been given caffeine drips in the hospital, I refer to them as IV lattes.) But it also is a major migraine trigger for me. So definitely ****** if I do, ****** if I don't.... Sandy

I have had a few brady episodes, and thus far have had no ill effects. I have an implanted loop recorder (a Reveal monitor by Medtronic) that catches them all, but my EP says none of them were anything to write home about. But I hope you mentioned it, because a lot of times it doesn't matter what the numbers are specifically, it just matters that there is a departure from "norm". Sandy

I agree, call Duke! You REALLY need to speak with a pediatric EP before doing the surgery if at all possible. Operating on children isn't really operating on small adults. Praying for you both, I can only guess how frightening this must be! Sandy

The thing I found really disturbing was the level of both misinformation and incivility. People were trying to market all kinds of snake oil, going so far as to tell people to stop seeing their doctors if they were not supportive of them taking supplements. And heaven forbid you politely disagree with someone's opinion! Then you are setting yourself up for attack! I was just stunned! This was the first group I found, 4 years ago (in August it will be 4 years that I have been very ill.) shortly after my diagnosis. The nurse who explained my TTT results gave me a list of websites they recommended. As this was the Cleveland Clinic suggesting I look for further info here, it seemed a good place to go. And you guys have never let me down, even when we disagree! Just such a change from what I was used to! My EDS diagnosis is still very new, so I was looking for support and more info, the facebook group was a serious "fail"! Sandy

I don't know how on topic this is.... I recently joined an EDS group on facebook, and it has very quickly realize how special this forum is. People were openly cursing at one another, giving often inaccurate advice in order to sell supplements, telling people to disregard their doctor's orders. I know we have different points of view here, but in general everyone is very supportive of one another, and very positive in their communications. So just a quick thanks for being awesome! Sandy

I was initially diagnosed at the Cleveland Clinic, and seen by Dr. Fouad. In my experience, your results with her depend a great deal on what kind of symptoms you are presenting with. The diagnostics they did were wonderful, very complete. The doctors I have seen in other parts of the hospital have been wonderful. (neurology, gastroenterology, emergency room) at the time I was not experiencing syncope episodes very often at all. Maybe one every few months. (Oh, if only it had stayed that way!) Her focus seemed to be on syncope, not so much on so many of the other POTS symptoms. My GI and migraine issues were giving me much more trouble then. So I switched to Dr. Grubb in Toledo. He is absolutely amazing, and quite possibly the kindest, most compassionate human being I have ever met. The trouble there is that he sees so many patients, all over the world, that getting feedback from the office when you are having a crisis can be difficult. Which is a problem you tend to see with quite a few of the docs who are the top experts. I take comfort in the fact that if it was easy to get in with him, he's probably not worth seeing! Hope this helps! Sandy

My (now ex) husband was HORRIBLE once I got sick. He constantly complained and criticized me for not doing enough, for being lazy, ungrateful, and being "negative". His mother told me I need to stop seeing all these doctors and wracking up all these bills for her son to pay, (Which never once happened. He did not pay a single medical bill, pay for a single co-pay or prescription.) because I needed to just accept that sometimes life just hurts. He demanded that I continue to work full time to cover my expenses, expected lavish gifts from me, and got angry at me when I had medical bills piling up that I couldn't pay. The last time I was hospitalized, he showed up at the hospital one time during my 8 day stay. He came with my checkbook, because he insisted that I had to write him a check for the car payment. One of the biggest sighs of relief I have ever made was when he said we should get a divorce. I was committed to my marriage and desperately wanted to make it work. I am telling you right now, if he is not supportive and caring at least 90% of the time (we all have our moments when we screw up, nobody's perfect!) tell him to shape up or ship out. As hard as it was physically, financially (because of course he couldn't even help me put a $500 down payment on an apartment!) and emotionally to leave, I have never been happier in my life than when I moved into my crappy little apartment. Even though my health has continued to derail, I am so glad I am free of such a negative situation. Better yet, with time, and a good therapist, and a little luck, I was able to make room in my life for a really amazing guy, who supports me no matter what. So if he doesn't respond to counseling, I would say adios! Sandy

I have been seriously symptomatic for four years. I had fainting spells as a teenager, but these eventually resolve, chalked up to my build being very thin and therefore more related to insufficient nutrition/anemia. In theory, that should have been the end of the story. However, four years ago (almost exactly, my anniversary/birthday is coming up) I woke up on my 31st birthday with a brutal migraine that lasted 8 months and responded to nothing. After having doctors tell me the cause was everything from my VERY borderline chiari malformation/low-lying cerebellar tonsils to depression, a last-ditch trip to the Cleveland Clinic yield a tilt table test and a definitive answer. I failed the test with flying colors. So while you could say I have had symptoms for close to twenty years, the syncope episodes I had as a teen did not affect my life to anywhere near the degree it does now. Sandy

I have frequent migraines, and after being fairly well controlled for a while, they seem to be increasing dramatically of late. I wish I knew why! I have had some med changes as a result of my EDS type III diagnosis, and I know narcotics can cause rebound headaches, but I am on constant meds. (fentanyl patches) I have had a tremendous amount of visual symptoms, blurry/double vision, auras, snow, and shooting lights. I will be back in Ohio next week (after 7 months in North Carolina because I needed additional care. My folks are down here. But my boyfriend proposed, and Mom had a severe back injury, so I am headed back home.) and I have to say I am really relieved that I will be able to see all my wonderful Cleveland Clinic docs, and Dr. Grubb. Hopefully they will have some bright ideas to help!

Just to add my two cents, Dr. Grubb (who as others have stated is at the University of Toledo Heart and Vascular Center at UT Medical Center) is without a doubt the most knowledgeable and compassionate doctor you could ever have the good fortune to see. If only there were more like him! I just saw him last month, and even in delivering some very difficult news his genuine concern and caring softened the blow quite a bit. It is a long wait to get in with him, but you can often see his nurse practitioner, Bev Carabin, much sooner. She has co-authored much of his work, and is every bit as kind. It is worth the wait and travel to see either one of them, because the powerpoint presentation they give about POTS helps you to understand so much better what is happening and why, and your best treatment options. Good Luck! Sandy

On tuesday I had injections of medical botox to treat my recurring migraines. My neurologist warned me that there could be some neck pain. Well not only in my neck in agony, I have been up most of the night, but the pain is spreading all the way down my spine, getting numbness in both my arms, and starting to have difficulty swallowing. From what I can find on the internet, these are all common side effects, but nothing tells me what to do. Overnight I was taking anything I could think of to help, vicodin, ibuprofrn, muscle relaxers and zofran. In so my pain my appetite has completely disappear, have to force myself to eat. Has anyone had any experience with this? Is this bad reaction related to my EDS? Any insight would be welcome! Sandy

Lieze, I am not as tiny as you, but have lost a LOT of weight this year. (I was recently diagnosed with celiac, so I can relate so very well to changing everything about you eat, and having to be almost maniacal about reading labels!) But I saw Dr. Grubb a few weeks ago and he had a great suggestion as to gaining some weight. If you can tolerate it, have a heaping teaspoon of peanut butter once an hour. (You can sub almond butter) I have mine on a rice cake with honey (i have a serious sweet tooth!) and it is super tasty. Keeping my fingers crossed for you! And FYI, with my new diet my weight has stabilized, but after 2 months of being gluten free i am still having trouble gaining the weight back. Sandy

Just a word to the wise, if there is any chance of joint hypermobility syndrome (also know as ehlers-danlos type III), or really any of the Ehlers-Danlos syndromes, you should absolutely NOT have chiropractic "adjustments". It would make you MUCH more prone to dislocations. And these syndromes are pretty common in POTSy people. (Or it's pretty common for people with EDS to have POTS, which came first, the chicken or the egg?) Sandy

Thanks Noreen! I have a bunch of follow ups scheduled, we'll see how it all pans out. A couple of my joints are particularly bad, my right ankle and right wrist being chief among them. Finding lots of good advice in the book, but still finding it hard reading. In a bizarre way, the fact that it describes me so perfectly, down to the many, repeated injuries I sustained playing soccer when I was little robs me of any deniability. And there is still that small part of me that wants it all to be a big misunderstanding, and it is just so clearly accurate. Sigh! I think I am impossible to please. For years I wanted a diagnosis that made sense, and now that I have one (however complicated!) I wish it was wrong! Sandy

He actually did have a great suggestion for trying to gain some weight back. He suggested I have a heaping teaspoon of peanut butter once an hour. He said it won't really fill me up, but will add nearly a full days worth of calories to my normal intake. He also recommended a book, "Joint Hypermobility Handbook" by Brad Tinkle MD, PhD. I have it already, but I have to tell you, reading the book is kind of giving me the willies! It is so right on target, describes my symptoms exactly. Which I find kind of terrifying. On the up side of things I think this is the "missing link" between my issues, the missing puzzle peace. Now everything fits. But it also means that my pain is not going to go away, and my repeated injuries (my right ankle seems to be permanently sprained) will only continue and increase. So that is kind of hard to swallow. I had really hoped that once all of my problems were properly diagnosed, that there would be some clear treatment plan that would set me back to rights. The fact that isn't going to happen, is kind of hard to swallow. But at least I have answers now. And even answers I don't like are better than no answers at all. Sandy

So I had my usual annual visit with Dr. Grubb, and came armed with a laundry list of questions. Not the least of which was, "I know you diagnosed me with Joint Hypermobility Disorder last year, but do you think I may have Ehlers-Danlos as well?" to which he replied, "Sandy, that is Ehlers-Danlos, Type III to be specific. We just don't call it that anymore." Doh! This is why I should pay more attention, clearly! At least it certainly explains both where my POTS came from, why I am in so much pain these days, and why I keep injuring various joints. My right ankle never gets UN-sprained anymore. Unfortunately, my failure to grasp this means that the physical therapy I had been doing for the last several weeks was doing all sorts of things which horrified the good Doctor! Sigh. So I get to ask my primary care doc for a referral for a local pain specialist and rheumatologist. Yipee. I have to say though, as much as this was always the answer I was most afraid of, now that it finally happened, I find my stress actually getting much less. Like I just don't have anything else to be afraid of. So I will count my blessings, and try to live life to the fullest I can for as long as I can. Sandy

Compounded medications can be very expensive, you may have to pick and choose. A lot of the vitamins you may be able to increase through food sources. With your allergies, your insurance should cover compounded medications, but may not cover supplements. But given your allergies, insurance may cover a consult with a dietician to help you figure out how to get the nutrients you need from food sources while avoiding corn. And as the saying goes, "Mom knows best!" Glad you're getting some much needed rest and care! Sandy

After my Celiac diagnosis, I went strict gluten free. I'm forced to stick with it, whether I like it or not. I know someone said that trace amount of gluten from cross contamination can cause Celiacs to have damage for "up to three weeks, even if they don't have symptoms". That is actually incorrect. Trace amounts of gluten, even from cross contamination can cause potentially IRREPARABLE damage. So on the rare occasions I do go out, (getting to be less all the time, seems even trace cross contamination for me personally always causes symptoms. I can control my environment much better at home.) I make a point of telling the staff that gluten will KILL me. Just to make sure that they don't say something is gluten free without checking. For what it's worth, my blood test was negative, but we later discovered that a low IgA rendered it a false negative. So further evaluation based on genetic testing, plus symptoms, plus adopting a gluten free diet led to my diagnosis. Sandy

Oh you poor thing! You have a LOT on your shoulders, even without the illness. And unfortunately, the times we most need time for ourselves are the times we just don't have any. But you are going to HAVE to MAKE time. If going to your parents is too stressful, the things your husband is saying to you are abuse, contact your local battered women's shelter. I know that sounds extreme, especially given your circumstances, but that is probably a place where you would find the most support, help to get you back on your feet. You deserve more than what you have been handed, and you deserve some help. Please don't hesitate to get it, none of this is your fault, and very little is even in your ability to control. You'll be in my prayers. Sandy

I don't know if it would be any easier for you, and I do not necessarily recommend it for the treatment of POTS, (didn't have a bad experience, just wasn't a perfect fit) but the testing facilities available at the Cleveland Clinic are absolutely top notch, and well accustomed to working around the time constraints of someone who is an out of town visitor. There are even 3 hotels on the hospital campus itself. (Which is HUGE!) And it sounds like you have a lot more than POTS going on, so it might be worth considering the CC. I still see a neuro and a GI doc there, but switched to Dr. Grubb for my POTS/heart care. Not to mention I have always found the staff at the Cleveland Clinic extremely helpful and very nice. And unlike many places I have been seen, they actually send you a copy of the letters they send to your local PCP regarding follow up care, so everyone is on the same page. Sandy

Oops, hit "post" twice! Brain fog, anyone? lol Sandy