sandymbme

Just throwing my two cents out. One is that most narcotic pain killers including vicodin are known for having a sedative effect, which typically lowers blood pressure. I would imagine the same is true for heart rate as well. My pain management doc has to keep a really close eye on my BP, as I am very hypotensive it doesn't take much to push me to far down. But if my pain level gets too high, BP is the least of my concerns! I used to do really well with tramadol, I found it very effective. As my body has continued to degenerate, it doesn't do the trick anymore. Which is a bummer, because the tramadol is a LOT less likely to cause rebound headaches. I find it interesting that you guys are taking narcotics for migraines, because my headache specialist at the Cleveland Clinic would have me taking ZERO if I could manage my EDS without them. He said that opioid narcotics like vicodin and percocet cause rebound headaches, and are best avoided by migraine sufferers. During the time I could still manage without them, I definitely had less migraines overall. These days, though, it seems I have to pick my poison! Sandy

Thanks Julie and Issie. Mom actually sustained damage to her heart muscle from the spasming, not to mention nearly drowned to death as her lungs filled with fluid as well. (Did I mention how beyond grateful I am this happened in a hospital! Her docs are convinced had it happened at home she would have died. Thank God!) I am more than willing to give an antihistamine a try. We usually have zyrtec and benadryl in the house, is there something else that is better, or would one of those do? Thanks! Sandy

The HR is pretty close to ideal. But how is your blood pressure? If that is low, and BB's can really lower it, it can make you feel very, very fatigued. And can cause some pretty serious problems. In any case, if you are feeling different from what is "normal" for YOU, don't hesitate to get checked out. Sandy

I am just trying to start hydrocortisone (cortef) and not doing very well with it. We started DDAVP at roughly the same time, though, so which is the trigger I don't know. But having terrible migraines, and my BP skyrocketed so much that we actually discontinued the DDAVP last night. Still trying the hydrocortisone, 20mg a day, but who knows if it is going to work out either. But I don't have MCAD, so maybe this all works differently for me? Sandy

My body temp always runs low. My normal is about yours, 96.5 (or so) to about 97.5. I can have horrific infectious illnesses like pneumonia, and never get over 99 degrees. Body temp is another autonomic function, though, so I am not really surprised mine doesn't work as it ought to. I personally do not have Lyme, or have any suspicion about having it, so no connection there for me. Sandy

I seen an integrative doc as well. (I am in Ohio, so not much help for you!) Best of both worlds, as Dizzysillyak said. She not only treats any given condition the way my body seems to respond best, but it also completely aware of EVERYTHING I take, and is able to guide me without ending up with unintended drug interactions. Because herbal medications are still drugs, and can have side effects and be dangerous. So I have known people who have naturopath doctors that rave about them, but I think for those of us who have systems as complicated as ours are, I like the integrative approach better. Good luck! Sandy

I have had numbness in my hands, feet and face for so long that my home health care nurse doesn't even ask me about it anymore, just jots it down on her paperwork every week! Sandy

I have actually just started having severe chest pain, right over my sternum, occasionally shooting down one or the other of my arms, (not just the left, it can be the right, but never both at the same time) and have not the slightest idea what the cause is. Cardiac CT came back okay, as well as the EKG. That is the only testing I have had. I do have an implanted monitor (a medtronic "Reveal" loop recorder) but when I saw Beverly Carabin last week she said that nothing popped up on the reports there either. I do have EDS and POTS, and my mother just had essentially a heart attack caused by a major artery in the one of the upper chambers "spasming". No blockages of any kind, the cardiologist said her arteries were gorgeous on the cardiac cath. But it makes me a bit nervous! (Mainly for her!) Sandy

I would wonder about food triggers as well. Although I would stress it is VERY important to discuss with his doctor before trying an elimination diet. For instance, celiac disease, (which I have) can cause a lot of the symptoms you describe, but if he has gone on a gluten free diet before testing is done it will come back falsely negative. It takes gluten to stimulate the response that shows up on the blood test, and even then, the blood test is by no means precise. My was negative, but my low IgA meant that no matter how much gluten I ate it would never read positive. The other "standard" test, an endoscopy, will again only show intestinal damage if he is currently eating gluten in his diet. So testing for this needs to be done first. That said, there are a laundry list of GI and digestion issues that are very common with POTSies. Digestion is an autonomic function, so it pops up as an issue for a lot of us. The main DINET web site has lots of great info on common symptoms, as well as suggestions of things you can try to help him cope. And as they don't understand the mechanisms of this illness very well, it can be very difficult to get a med routine that works. It usually takes a lot of tinkering, and even when you have a good one, it occasionally needs adjustment. Good luck! Sandy

I have so been there! I used to swear my ailments were terrified of radiation, because every test I had, whether CT, X-ray, or MRI, would always come back negative. But on the occasions that they had to actually open me up, for what ever reason, the appendix that looked fine on film was angry and red and had to come out immediately. Same deal for my gall bladder! And when I would try to explain to doctors that things just weren't always what they seemed with me, they would look at me like I was crazy, some sort of surgery junkie! Which given how badly I recover, I can assure you that is the LAST thing I want to do! It can be so very difficult getting the care we need. Having a rare disease forces you to become very self-educated, because you frequently run into doctors, even specialists, who have no idea what it is. Even if they do, a great truth to remember is that while they may be a specialist in their field, you are the expert on YOU. If you are not having your pain issue address, and to the best of their ability, resolved, I encourage you not to give up. I have found I get the best results phrasing things something like this, " I appreciate you running those tests. Clearly this did not yield us any answers, and my pain is still unresolved. What do you suggest we do next to evaluate and treat it? Should we consider a referral to physical therapy and/or pain management?" I find that asking more open-ended questions is more effective than saying, "But I am still sick! What is wrong with me?" and usually gets better results. My mom is a nurse, and my dad a pharmacist, and both of them have told me that physicians in general are very solution-oriented. They tend to care less about root causes than we do, and more about cures. So asking them about treatment plans usually, (although sadly, not always!) gets a better result. Hope this helps! Sandy

My dad is a pharmacist, (which is really handy when the store pharmacists are less than forthcoming about possible interactions or info on new meds!) and he has told me that medications, unless they are the rapid dissolve or fast acting formulations, take a good 20 minutes to hit the bloodstream. However, many of us POTSies are prone to anxiety, and a anxious reaction to taking a new med could have caused the "itchy feeling". That being said, if you are very, very sensitive you may have had an allergic reaction from just touching the pill. So I would say consulting your doctor would be the best idea before taking it again. I would ask if taking it with benadryl would be okay, because not only could it help with an allergic reaction, but it's slightly sedative effect could help you to stay calm as well. Good luck!! Sandy

I too, have been told not to worry about the high heart rate. And I too, am a bit skeptical. I don't see how they can really say one way or another, given that long-term data on POTSies is relatively limited. It just has not been studied (relatively speaking) very long. Most of the data goes back, at the most, 20 years. Looking at my family tree, it seems people either drop dead really young, (under 50) or live into their late 90's. So I haven't a clue! Sandy

I was told by Dr. Grubb that some POTS patients actually do significantly better during pregnancy, with the increase of blood pressure and the surge of hormones. I personally have never been well enough to attempt pregnancy, and ended up having to have a hysterectomy in January, (I'm 36, so it was fairly young.) so that option is no longer open to me. But my mom told me that she felt the best she ever has while pregnant. She had zero migraines, and felt healthy and strong. She said that played a big role in her having 4 children! I know having symptoms return after a period of relative health can be crushing though. I have only ever had one "remission", and it only lasted about 4 months. It was just devastating when my symptoms started to pop back up. But during my brief window, I was well enough to go back to work for a few months, and met my fiance. So I try to remember that everything happens for a reason. Had I not had the window of health, I would have never had the amazing, compassionate man who carries me (literally!) through so much. And ironically, the fact that I had my first hospitalization for a relapse of symptoms 6 days after we started dating has proven to be a real blessing. He has never really known me "well", so he has no unrealistic expectations of what I can and can not do. I try, very hard, to appreciate and focus on the gift the remission was, and less on the pain I feel at it ending. It doesn't change anything, but changing my focus makes me feel blessed, rather than burdened. Good luck! Sandy

Oh Igail! This is such a painful experience! When I first started getting sick, my (then current) PCP fired me. She had seen everything develop from the very beginning, had the most insight, but told me she just couldn't handle me anymore. She told me her patient load was just too high to be dealing with a patient who needed so much coordination of care. It felt like such a betrayal, and I was so sick at the time the task of finding a PCP seemed overwhelming. At the time, I had my diagnosis of POTS, (from the Cleveland Clinic, who did all my autonomic testing) but I really had no idea what I was dealing with. I just felt completely blindsided. It ended up being the biggest blessing in disguise. I interviewed a bunch of doctor's (usually could rule them in or out as possibilities just asking the front office staff some questions.) I would ask things like: How often does this doctor attend conferences and lectures? Are they willing/able to coordinate care with a variety of specialists? Are they willing/able to take extra time with their patients? How quickly can you get a response about emergent situations? Are they typically aggressive with treatment, or do they prefer to take a more hands-off approach and see if things will run their course before intervening? A lot of times the front office can answer most, if not all of those questions for you. I only had face to face visits with a couple of doctors. I ended up with a PCP who is passionate about patient care, an amazing advocate for me, and she does not think the solution to every problem lies in her prescription pad. She is willing, and knowledgeable able alternative and herbal/homeopathic medicine as well. The moral of my story is, nearly all of us have been in this situation, or something similar, at one point or another. I know it is very, very disheartening. But it is an opportunity as well. You have found out relatively early in the game that your PCP is not quite the advocate you had hoped for. This gives you the opportunity to look for a doctor who perfectly meets your needs. Because as a dysautonomia patient, your needs can change wildly on a daily basis, and so much of what happens to us is unexplained. So many of our treatments fall into what insurers often consider as "experimental", because there is no "standard" treatment for us. So having an MD who is responsive to your needs, is willing to go to bat for you, and willing to stay on top of the latest research, is going to be key to managing your health in the long run. My PCP had never heard of POTS when we started our journey together 4 years ago. Now she has several patients with it, a couple of whom she was able to correctly identify and send for testing to officially dx because of having seen me. She has never accepted that there is no way to improve my health, and never stops looking for answers and alternatives. And as much as my health has deteriorated over the last several years, I am completely confident I would be in a LOT worse shape had I not been under her care. Good luck, and I will be keeping you in my prayers! Sandy

Only nine Ernie! I would say nine is plenty! Sandy

Saw my doctor today, she is increasing my vitamin D, and wants to start me on biodentical hormones. She didn't want to put me on one of the osteoporosis medications because I have so many health conditions, she was afraid of all the side effects. She did suspect that a combination of the celiac disease, and my body's inability to manufacture the necessary hormones. (as evidenced by testing 2 years before my hysterectomy, when I was 34) So she is hoping we can get things under control with those measures. She said she would retest my hormone levels in 3 months, and repeat the bone density scan in just a year. She said she did not want to let it go for two years without retesting, as I already have full blown osteoporosis in my spine, and the osteopenia in my hips really concerns her given that I am having significant hip problems already due to the EDS. And the icing on the cake? My A1C showed that my blood sugar was just above normal range, so she is starting me metaformin as well. When it rains, it pours! Sandy

Just a quick note to echo what sugartwin said, don't worry about the waste of resources. MRI's see a LOT that is not visible on CT, it is a MUCH more sensitive test. Not to mention carries a lot less risk to you as it gives off less radiation. If you have not had an MRI of the brain, it is one of the baseline tests most of us get at some point or another to rule out any neurological cause of our dysautonomia, anyway. So think of it as a routine screening. Besides, severe headaches are not something to be lightly dismissed! Sandy

I am getting pretty close to being due for one, but I wouldn't hesitate. Unfortunately we can't live in a bubble, and you have to weigh out risk/benefit for many of these decisions. I have had flu and pneumonia vaccines with no issues, and I figure it is far better to get the vaccine than to get tetanus. That said, if you have had major issues with vaccines in the past, make sure you discuss that with your doctor before having it. Sandy

Definitely trying to get a whole new set of doctors can be frustrating beyond words. Don't forget to check out the physician list on DINET, can be really helpful. So sorry you need to be here, but awfully glad you came looking for support. This is not an illness you can handle "solo", being able to confide in and sympathize with people coming from the same place is an important part of coping. Sandy

Pain (joint and or migraines), GI issues, and syncope. I may not always have these 3, although I usually have at least one, but they are certainly the ones that interfere in my life the most. Sandy

It is almost funny to me, after years of trying to figure out what on earth was wrong with me, suddenly I can't seem to stop collecting dx's. I was sent for what was supposed to be a baseline bone density test last week, as I had an emergency hysterectomy last year. My doctor's office called in a panic, they want to see me today, I have osteoporosis in my spine, and osteopenia in my hips. Good grief! I guess I am 36 going on 80! I guess I will find out this afternoon what this new wrinkle means, but for the moment, I think I am just more irritated at having yet ANOTHER dx to worry about! Sandy

One thing that it is really important to know about narcotic medications is that there is a world of difference between being dependent on your medications, and being ADDICTED. I am dependent on many of my medications. I can not function at all without my midodrine. Because it has no "high", no one would ever accuse me of being addicted to it. But I do NEED the medication. I have a degenerative connective tissue disorder, and suffer frequent injuries and constant pain. In addition, I suffer widespread pain associated with my POTS. I take percocet, and fentanyl patches, at the direction of my pain management doctor. I am dependent on my pain medication, much as I am dependent on my midodrine, or my vitamins, or my beta-blocker. I am not addicted. I never take pain medication when I am not in pain. I never take more than directed. I discuss my pain management strategies with my pain management specialist, and we have frequent conversations about how I am feeling, current injuries, and additional strategies such as physical therapy. Our goal with pain medication is not to get me to a point of zero pain. But if you are in constant, unremitting, serious pain it also interferes with your body's ability to heal and recover. Please don't let fear of addiction interfere with you getting the best possible care for your illness and for managing your pain. Part of that management is taking medications, even pain medications like percocet, as directed by your physician. If you feel he has you taking too much, you NEED to discuss this with your doctor. They can prescribe you a smaller dose, and it will help support a open and trust-based environment for pain management. Hope this helps! Sandy

If you are finding pet hair, I would also recommend vacuuming (or having someone else vacuum!) with a high efficiency hepa vacuum. Where there is hair, there is dander. I have a cat myself, and for me the companionship, humor, and love she provides offsets the allergens for me. But my pet allergies are no where near as bad as my chemical sensitivities, and Polly is well worth it! Sandy

Oh Lieze, I am so very sorry that all of this is so horribly frightening for you. I am lifting you up in prayer, and hoping that knowing someone cares can help you to feel a tiny bit less frightened. I had a terrible time with venipunctures. I have terrible veins, they are very, very small. They roll, they collapse, they hide. Naturally, my most essential therapy is my IV hydration! A picc line was a horrible option for me, for a variety of reasons, but if you are only going to be doing the iron treatments for a short time, that may be a good option for you. I started out getting IV saline three times a week. We would access me on Mondays and Fridays. As it always took a minimum of 2-3 attempts at 2-3 locations to access my veins, we would leave the IV accessed from Monday to Wednesday, and would have left it in longer if we could have more than 72 hours. (Which is the longest you can leave a standard venipuncture.) Towards the end, my veins were so absolutely destroyed we would be trying, in desperation, to access my feet. As I have never responded as well to any other therapy, we finally made the decision that I needed a port/cath. Because a port is a central line, it is not a decision to be made lightly. Having said that, I would not trade it for the world! I get accessed once a week, and only have to get stuck once. They can use my port for everything from IV fluids to blood draws. And because I have a Power Port (which is a specific brand/model) they can even use it for CT scan's with IV contrast. So if this is going to be a long term course of therapy, I think that given your anxiety, it is worth discussing your options with your doctor. Both picc lines and ports carry a higher risk for septic infection, though, which is a potentially life-threatening infection. So most doctors will only consider picc lines for short term ongoing treatments, and it must be pretty long term therapy for a port. Personally, I can't imagine life without mine. The rare occasions I do have to have a venipuncture, I am painfully reminded of just how bad my veins are. They have healed a bit, with time, but they are still mightily uncooperative. I have also had to increase my IV fluids to pretty much daily, between my celiac disease and my POTS I have a really hard time getting and staying sufficiently hydrated, and I have severe hypotension with the fluids, without I can't even function. In any case, when having your treatments, try to take calm, long soothing breaths inward and out. Picture your medication "beating up" your illness. Try to focus on how much better it can make you feel, rather than how uncomfortable and anxious you are. For the record, venipucture can irritate your veins, some medications much more than others. So you are not imaging things. But your anxiety is without question making things harder for you. If you have anti-axiety meds, I would certainly take it before treatment as long as your doctor has no objection. Breathing and relaxation techniques, as well as positive imaging, will help your anxiety as well. I hope this helps! Sandy

I too had symptoms young, around 17, and am still sick at 36. Like Issie I have EDS, and other factors at play. My EDS is the root cause of my POTS, and who knows how many other problems. I was blessed enough to have a long period of relative normalcy in my 20's. A fair amount of "dizzy spells" where I would get a bit woozy, but nothing as serious as what I suffer today, and I worked a series of very physical jobs. My biggest regret from that time was that I never dreamed I would relapse, mainly because there was no proper diagnosis when I was young. My doctor at the time simply recommended I stop the activity, (aerobics, go figure!) that was triggering the syncope episodes. I feel that I could have perhaps hung on to my relative health a bit longer had I taken better care of myself. So I would say to even those who are young and on the mend, always mind your health! I don't exactly beat myself up over not doing so, but I would sleep better knowing I had done everything I could to stay as healthy as possible as long as possible. Now I do all I possibly can, and on my good days can manage most of my symptoms. But far from all. Sandy