janiedelite

I just thought of something I should have thought of earlier... could you go back on your original ultram dose for a few days? If your symptoms lessen, then you'll know...

I pulled some info about ultram withdrawal off the first site that came up: Withdrawal Withdrawal symptoms may occur if ULTRAM? is discontinued abruptly. (See Drug Abuse And Dependence.) These symptoms may include: anxiety, sweating, insomnia, rigors, pain,nausea, tremors, diarrhea, upper respiratory symptoms, piloerection,and rarely hallucinations.Other symptoms that have been seen less frequently with ULTRAM discontinuation include: panic attacks, severe anxiety, and paresthesias. Clinical experience suggests that withdrawal symptoms may be avoided by tapering ULTRAM at the time of discontinuation. Physical Dependence and Abuse ULTRAM? may induce psychic and physical dependence of the morphine-type (u-opioid) (see Drug Abuse And Dependence). When my hubby's doc prescribed Ultram after his car accident, the doc said he wouldn't experience narcotic dependence because even though part of the drug does act like an opioid, part of the drug is also an opioid antagonist (like nubain). That was all fine until he had to wean off his 50mg twice a day. Then he had terrible withdrawal. Due to the accident, I severely injured my hip and had a couple surgeries. I took quite a bit of oxycodone after the first surgery and went through withdrawal... nausea, cramps, diarrhea, panic/surges of anxiety, pain all over, cold sweats... Just like what my hubby experienced. It took over 2 weeks for the worst of the withdrawal to be over and I only took oxy for a couple weeks (but I'd taken 1-2 vicodin a day for several months prior to the surgery). It was really horrible. As I mentioned before, nortriptyline helped my hubby out of the worst of his withdrawal symptoms. I've needed narcotics off and on for my neuropathy/POTS pain and during some flares I've had to take them pretty regularly. Lately though, when I stop taking the meds I don't really notice withdrawal much, partly because I really try to not take it regularly but also because when my POTS is flared I feel quite similarly to going thru withdrawal. I'm sorry you have to go through all this, and I hope I didn't overstep my bounds...

I live in Portland, and we've had a very wet and cold fall/winter/early spring. Today it's 48 degrees and cloudy. Two winters ago, I was sick with viruses for about 6 months straight. This winter, my hubby (who's a teacher) was sick at least once and I didn't catch it. Wierd. I don't go outside much, so I can't blame it on the weather. I just think my immune system is wacky.

Oh Suzy, I'm afraid you overdid things! Although I bet you'll enjoy your new firepit this summer! When I overdo things, I feel like my body has been run over by a steamroller. Remember in high school chemistry learning about ATP (the little molecule that supplies energy to our cells)? It feels like during the exertion, I use up 99% of my ATP. So either an hour later or a day later, I crash and it feels like I don't even have enough energy to breathe. And yes, every muscle hurts! For me, that's okay if there's something I REALLY want to do. I just know I'll pay for it, and I make sure to have time to crash later.... Janie

My PCP origianally recognized my symptoms as autonomic dysfunction and has totally supported me throughout at least 8 specialists and a trip to Mayo. I'm sorry your PCP doesn't validate your illness. It must be really hard to get adequate treatment!!! Do you have a specialist who really believes and helps you? Can they recommend a PCP who is more compassionate, maybe even write a brief referral describing your illness/symptoms?

Hi Mae, I'm sorry you're having to go through this. I also seem to get sick whenever I'm in the sun. My favorite time of day is dusk, and that's when my hubby and I take walks and do things outside. As you acclimate to your symptoms, you will figure out what your limits are. I wear very dark sunglasses outside as any glare makes me dizzy and ill. I've heard other talk about cooling vests and I think I'll invest in one in a month or so; I've heard it helps others be outside on warm days for a couple hours even! Also, compression hose (at least thigh high) are a must. When I got back from Mayo and started implementing the 3+liters a day, 4+grams sodium, and compression, I didn't feel better overnight but I kept at it. Now I don't have to spend most of my days in bed like I did all of last year. I still have bad days if I'm stressed or worn out, but I can do housework, run short errands alone, and I just have to plan for a few rest periods throughout the day. Don't underestimate how much your family loves you and will gladly make accomodations for you in order for them to be able to be with you! My first tachy episode was 10/06, but like you my neuropathy pain and POTS symptoms hit full-force during the last weekend in June, 2008 (wierd, huh?). My hubby and I have put off having kids for the last couple of years because of my bizarre health issues, but when we went to Mayo 3 months ago the neuro said I will have more struggles than normal moms but otherwise to go ahead! I live in Portland, Oregon, where spring, fall and winter are mostly cloudy and cool. It is quite humid here, sometimes, though. I hope you can get some encouragement from other moms with POTS on this forum. Take care, Janie

I'm so sorry you have to go through this, Gary. I remember last summer when my feet started burning from the neuropathy, and within a week it had spread upward to my hands, face and mouth, and to my whole body. I had no idea what was going on! Then the POTS symptoms hit, and I felt like I was dying. Like you, I knew my body was messed up and I tried to react as calmly as possible, especially in front of my doctors. But I couldn't help feeling so out-of-control... no doctor knew what was going on, although I remember telling my PCP that I felt like my sympathetic NS was on overdrive all the time! My husband took tramadol 50mg for a few months after a car accident and had so much pain and anxiety while weaning. What helped him was when his doc put him on a 1-month course of nortriptyline. It seemed to reset his nervous system. Don't underestimate the side effects of weaning off meds, especially when your adrenaline is already on overdrive. Keep trying to find a doctor who can help you. We all believe you, that this is a result of a physiological problem. I did start seeing a counselor last summer, just to help with coping with my pain and horrible symptoms. She did help me during the worst of it. What helped me the most, though, was resting when my body was on overdrive. And, getting answers at the Mayo clinic. They reassured me that I wasn't dying.

Hi waterbaby, I'm sorry to hear about your recent flare. Although it's encouraging to read about how relatively stable you've been! For me, I always have a slight tremor in my hands. But when I'm more flared then I get twitches in larger muscles like in my arms and legs. I also have CONSTANT nausea but I only throw up if I: eat a large meal (especially high fat), really over-exert and/or am not vigilant about staying hydrated. When I do throw up, it's accompanied by horrible tremors (shake the whole bed), migraine, all-over pain, basically POTS symptoms just to the max. It usually takes me hours, if not days, to recover. I keep some phenergan on hand for times such as these. When I did a motility study, we found my small intestine moves really slowly. I hope you get out of this flare soon! Please do whatever you can to stay hydrated...

Wow! That makes sense that norepinephrine can cause vasoconstriction of the carotids. My norepi levels are high on standing, and I regularly experience the adrenaline surge symptoms. But even though I grey-out regularly, I never pass out. I figured the norepinephrine was preventing passing out. But you'd think with the adrenaline that my head would feel better, but it still feels so heavy and my thinking is very muddled. I can also see my pulse, that is my vision "bounces" with every heartbeat. I don't know...this is such a wierd disease. And Nauthiz, my BP and heartrate go up when I stand too. The Mayo doc said this was actually a good thing because it meant that my sympathetic nervous system wasn't broken, and the excessive adrenaline was a normal response to my abnormal blood pooling.

1. Do you believe -or has a doctor told you - that you experience blood pooling mainly in your legs? No, I was told I have it in my abdomen and my hands turn colors when they're lowered also. 2. Have you ever been diagnosed with EDS or suspect that you may have it? I'm pretty sure I don't have it. 3. Do you experience symptoms when lying down even after a night of sleep in your bed? Yes. 4. Have you ever been diagnosed or suspect that you have what has been called the Hyperadrenergic form of POTS? The Mayo doc said I have mild hyperadrenergic POTS due to elevated norepinephrine and BP on standing. 5. Have you ever been informed by a doctor that you have low blood volume? No 6. Do you experience stomach-related symptoms similar to what has been described as Irritable Bowel? Yes, I have slow small intestine emptying. 7. Do you believe you experience excessive vasoconstriction of your hands and feet after standing or when symptomatic - which MAY be demonstrated through a feeling of them being cold or without visible veins? Yes, I've been diagnosed with chronic frostbite from the vasoconstriction. 8. Did your POTS arrive suddenly? Not really. 9. Is your skin pale? Yes. 10. Please the top 6 worst symptoms that you experience with POTS: Fatigue, pain (chest, abdomen, arms, legs, head), burning skin pain from neuropathy, sleep disruption, brain fog, exercise/activity intolerance

I'd love to know more about this too! For me, it usually happens with too much talking or stress (like at Drs appts) and starts in my face but spreads to my ears, scalp and neck. Even my torso gets pink. My hands and feet are usually pale and cold and sweaty. Benadryl helps somewhat, although it takes a couple hours to be of benefit. I've tried taking H1 and H2 blockers daily but my POTS and flushing seemed to be unchanged. I wonder if the benadryl helps just because it calms my sympathetic nervous system a bit?

Yes, tomato juice/V8 is super high in sodium, but I can't stand the taste ! More power to those who like it! I get 20oz bottles of G2 (I know the artificial sweetners are bad for us, but I don't like how all the sugar makes me feel in regular Gatorade). It has 270mg of sodium and I get a 24-pack at Costco for about $15. First I added just 1/4 a tsp of salt, but like Summer now I'm used to the salty taste and add 1/2 a tsp. Other tricks: soup/broth (one serving can have up to 1000mg!) and you can even use those chicken bouillon cubes, cheddar rice cakes (called Quakes, they're low calorie), beef/turkey jerkey, pickles, and just salting everything else you eat! I have digestion problems, too, but I can usually drink without problems. I even keep a salted bottle of G2 in my car trunk for emergencies. I'm also slightly plumper since POTS, so I try to avoid the yummiest salty foods like chips and fries.

Ha! Oops...

Hi Tammy, I'm just going to give suggestions but I have the same sympathetic overdrive as you, although mine doesn't seem so severe. I hate to give you the same advice you've read elsewhere, but controlling my POTS better has helped my adrenaline surges (not perfectly, though). For me it means wearing waist-high compression all day long, 3+ liters of fluid, 4+ gms of sodium, rest and careful exercise. Mornings are hardest so I plan on lying in bed for the first few hours of the day while I drink salted gatorade. I couldn't take midodrine because I have alternating pooling and severe vasoconstriction and the midodrine turned my feet and hands cold and blue. Florinef made my BP too high. The next med on my list to try is mestinon. The Mayo doc didn't want to start me on BB's because my high heartrate is actually a healthy attempt by my body to maintain bloodflow to my brain. I'm sorry you haven't found any relief. Have you been through thorough autonomic testing to try to determine the cause of your POTS? I'm sorry you have to leave your job. It must be such a scary time, especially when your body seems to be so out of control. I still dream about going back to my nursing job, but in reality that won't be happening anytime soon. When my POTS first hit, I had over 40 Dr's appointments and 4 ER visits and was told that I had everything from Purple Toe Syndrome to erythromelalgia to anxiety to V-tach. I was able to finally get some answers at Mayo, and even though I can't work I have a better quality of life since I went. Although, I could have implemented all Mayo's suggestions without having gone all the way to Minnesota, but getting evaluated gave my husband and I peace of mind by ruling out all of the scarier causes of POTS. I'm sorry you have to be saddled with this unpredictable, difficult to manage illness. I'm glad you have faith in God, who has actually helped my husband and I to grow closer through these past difficult years. Please let us know how you're doing and post any further questions, Janie

Maybe you should go back to the rheumatologist and finish investigating AS. Yes, the treatments are hardcore, but what if you have AS and could have done something to prevent some damage? I'm sorry you have to deal with this, but I think it might be worse to ignore it.

I have low back and hip pain but they are not related to my POTS, but to a car accident which caused me to limp for 2 years. I had 2 hip surgeries and the hip is 90% better, but walking like Igor for 2 years has messed up my back. For me, my low back pain interferes with sitting comfortably. Exercise usually helps it, while resting makes my muscles tight and makes me sore. Whenever my POTS flares up, my back hurts more because I'm so immobile.

Yay!!!!! Good job pushing through it! I'm glad you were able to have some fun, and some good memories to look back on!

It's hard to know because I've only lived in Portland since I got sick and have nowhere else to compare it to. I do get worse with weather changes. I'm not sure how I'd do elsewhere. I have POTS/OI from small-fiber neuropathy (presumably from having mono 3 years ago.

Hi Pat, I was on the neurontin for 2 weeks. I didn't mind the usual fuzzy-brain side effects. Unfortunately both Lyrica and Neuronting completely shut down my colon . I have an unusually slow small bowel and colon anyway, but even with taking colace and senna I was painfully stopped up. I got relief the day after I stopped taking the pills. I think I tried taking the Neurontin twice, the first time was for 3 weeks and the second time for 2 weeks. My doc lowered the dose but I wasn't getting much relief from it anyway so I quit. On the other hand, Lyrica helped my pain immensely (not just the burning skin pain but all my back pain as well). But I had the same problem as when I took the neurontin unfortunately.

Hi ajw4055, I haven't tried Cymbalta. Good idea! I have tried accupuncture, gluten-free diet, herbal teas and other remedies with no success. I checked out a video from the library on deep breathing and relaxation/yoga. A lot of people with RSD seem to have problems in just one area of their bodies so they can get injections and other local treatments can be effective. I have burning in all of my skin, so a systemic treatment will probably be best. If I exhaust all the suggestions of my neurologist, I'll request to see a pain clinic doc. Right now I'm trying to avoid meds, though. But I'm wondering how I'll get through the summer. I can take narcotics while we're trying to conceive, just in small doses. I don't like to do it, but it works. If it gets too bad, my neuro said we could try topical lidocaine for my most sensitive areas (like my feet). My mom has had small fiber neuropathy for 4 years, since her carcinoid syndrome came out of remission. Anyway, sounds like I'm doing what can be done... . I'm just going to try to make the best of things staying indoors this summer. You all can relate! Thanks, Janie

Thanks, Heiferly, for the correction! I understand about not having anything touching your chest. Are you able to wear compression hose? I wasn't able to wear them through last summer, until November when the cool weather really set in. The crawling sensation is particularly irritating today, and I wish I could take them off but I'm going to try to tolerate them for as long as possible. It's so hard because we pool more in the heat, but I have more burning and skin sensitivity in the heat which prevents me from wearing compression and I'm even more debilitated. No, I haven't tried any tricyclics. Once we're done trying to conceive, either a tricyclic or mestinon will be next on my list to try. My neuro specializes in small-fiber neuropathy pain and suggested amitryptiline next. My husband went on nortryptiline for 2 months when he had a lot of back pain from a car accident and was weaning off Ultram/tramadol. It worked great for him, reducing his pinched nerve pains and helping with ultram withdrawal. For me, prevention seems to be the best treatment (avoid heat and stress and strenous activity) but nights are the worst for this burning so I take some vicodin if it's really painful. Benadryl sometimes helps, too, although lately I've been taking daily zyrtec and haven't noticed any benefit from that H1 blocker. I haven't been able to sleep with sheets on the bed for over a year now because they hold in too much heat on my burning feet. I only use a very soft, light down comforter and my feet stick out from underneath. Either my hands and feet are ice cold or red hot. I also have constant burning in my mouth and throat like I just drank a scalding cup of coffee. Caffeine makes it worse too. Someone recently posted about not being able to feel things that are hot, but to me anything that's slightly warm feels hot. I see you have hyperalgesia/allodynia also. I haven't been able to wear my wedding rings for over a year because of the hand pain, and often can't hold hands with my DH. What have you tried?

The topic title says it all. I've tried Lyrica and Neurontin but couldn't tolerate the side effects. I've been trying alpha lipoic acid 600mg daily but it doesn't seem to help. My hubby and I are currently trying to conceive, so I can't take other nerve meds right now (like lidocaine patches, ketamine patches or MAOI's like amitryptiline). We have one little dehumidifier/AC unit and last summer I lived in that one room. We moved our bed into it and everything. I'd drape cool washcloths over by burning feet, hands, and face and prop my feet in front of fans. Some days were so bad I couldn't tolerate clothing except for undies (which was fine since I rarely went anywhere anyway). Summer is such an isolating season for me. How do you folks manage? I'm probably going to invest in a good cooling vest... do you small fiber folks find that it helps at all with the burning pain??? Thanks, Janie

Jan, I live in Portland, Oregon, and have been revelling in our usually cloudy weather. We've recently had a string of sunny days, and I've been taking walks and doing some yardwork only to find that I feel so ill starting an hour or 2 after I've come indoors. I wear very dark prescription sunglasses (otherwise I get strong headaches, dizziness, nausea). I also have small fiber neuropathy which worsens my burning skin pain in heat. However, I sweat normally but still deal with easily getting dehydrated like most on this forum due to pooling/overheating. The ill feeling after being in the sun manifests as a headache, whole body aches, horribly fatigued, like I have a mild fever. Sometimes taking tylenol actually makes me feel better. I have very fair skin that burns easily. Our skin is the largest organ in our body and a sunburn is basically an inflammatory response in our skin. Also people with lupus or other AI (autoimmune) disorders get fevers and other AI reactions with sun exposure. I believe there is an autoimmune component to my neuropathic POTS. I go for walks twice a day to help prevent deconditioning, and I'm going to try to walk in the morning and at dusk in order to avoid the sun. Our house also has lots of eaves and awnings so that not much sun comes in through the windows. I hate to be such a vampire... so much for getting a little color this summer! I wish I had some suggestions to help you drive in the sun. For me, the sun glinting off the moving cars around me also makes things worse. I try to avoid the freeways because of this, and stick to less-trafficked side roads. I also try not to drive on sunny days. I can feel relatively fine, and then yesterday I was driving on a sunny day and it felt all of a sudden like I was spinning. It only lasted 1-2 seconds, but it scares me. I try not to drive on sunny days. Safe driving, Janie

Jan, I live in Portland, Oregon, and have been revelling in our usually cloudy weather. We've recently had a string of sunny days, and I've been taking walks and doing some yardwork only to find that I feel so ill starting an hour or 2 after I've come indoors. I wear very dark prescription sunglasses (otherwise I get strong headaches, dizziness, nausea). I also have small fiber neuropathy which worsens my burning skin pain in heat. However, I sweat normally but still deal with easily getting dehydrated like most on this forum due to pooling/overheating. The ill feeling after being in the sun manifests as a headache, whole body aches, horribly fatigued, like I have a mild fever. Sometimes taking tylenol actually makes me feel better. I have very fair skin that burns easily. Our skin is the largest organ in our body and a sunburn is basically an inflammatory response in our skin. Also people with lupus or other AI (autoimmune) disorders get fevers and other AI reactions with sun exposure. I believe there is an autoimmune component to my neuropathic POTS. I go for walks twice a day to help prevent deconditioning, and I'm going to try to walk in the morning and at dusk in order to avoid the sun. Our house also has lots of eaves and awnings so that not much sun comes in through the windows. I hate to be such a vampire... so much for getting a little color this summer! I wish I had some suggestions to help you drive in the sun. For me, the sun glinting off the moving cars around me also makes things worse. I try to avoid the freeways because of this, and stick to less-trafficked side roads. I also try not to drive on sunny days. I can feel relatively fine, and then yesterday I was driving on a sunny day and it felt all of a sudden like I was spinning. It only lasted 1-2 seconds, but it scares me. I try not to drive on sunny days. Safe driving, Janie

I live in Portland, Oregon, which has a climate and altitude quite similar to SanFransisco. In my opinion, Portland is a great place to live with dysautonomia because of the relatively constant temperatures. Also, we are cloudy most days and I seem to be bothered quite a bit by sunshine (either the glare, or I just feel ill for hours afterward). It is quite damp here, and I had a lot of problems 2 winters ago with perniosis (frostbite) of my toes all winter. We have hardwoods, and last summer we insulated them and now I make sure to wear Smartwools or other warm footwear. No big frostbite problems this last winter! Our summers here are much the same as Melissa described. It's hard because most folks don't have A/C. My hubby and I have a dehumidifier/A/C unit that we'll use again this summer. My small fiber neuropathy still flares badly in the summer because of the warmer temps. Our house is old and tends to trap heat in the attic, too, which doesn't help when there are a string of hot days. But I visited my brother in Las Vegas where A/C abounds and had a really hard time adjusting from hot to cold all the time.