futurehope

Kansasgirl8605, I lived through a bout of what you are describing when I was in high school. Anything in my mouth would trigger spasms so bad that I would double over.. I had mucous colitis and diarrhea to begin with, then the cramps, which lasted for months. I really have no idea what I had, or what you have. I got so thin from not eating. It was extremely difficult. Maybe you could tell your doctor of your current difficulties, and have them reschedule you?

I think you are on to something. Hopefully, you can find a healthier alternative. Remember that tea and cola have some caffeine in them. With my medical conditions, I stick with plain water, and plain 2 % milk 1 time/day.

I feel compelled to add the thought that people can mistake a "look" they see in you as meaning that you are "sad", or "down", when the reality is that you are exhausted. When people are tired, they may look depressed and not interact much, but the truth is, they are too tired to look otherwise, or to participate in office chit-chat.

Jump, I am going to assume that the persons who make these comments to you are unaware of your daily difficulties, right? It is up to you how much information about your troubles that you want to share. I do not usually go into details about my day-to-day difficulties, but, at appropriate times, I've mentioned that I feel like I'm 75 years old.....I'm not, or that I am unable to ...... So, in my own sly ways, I've managed to convey to people that my healthy demeanor is deceiving. You cannot get mad at people for saying something about your health when they really have no clue. I'm sure you've learned the hard way to monitor what you say about others, as looks are deceiving. Unfortunately, people say things that they shouldn't say all the time, and they make false assumptions about others (like the assumption that you are healthy). Try to forgive them their ignorance, or remind them of their good fortune (like they are reminding you), but gently suggest that not everyone can share their blessing of good health. Some people may be suffering from a hidden illness, an emotional trauma, or a wayward child, all of which may be invisible.

In addition to the above: I suggest calling the airline ahead of time so they will have a wheelchair ready to take you to a gate. Some airports have motorized transport to a gate. Do not carry or wheel too much if you try walking to the gate. It's tiring and sometimes a long way. Request bulkhead seating in the economy cabin so you can put your legs upwards on the bulkhead...or alternatively, the first seats on either side in the corner of the cabin are ideal for this. I typically put both legs up in the corner. Obviously, wear loose clothing so you can maneuver without splitting your pants. If money allows, first class (or envoy class) is the way to go...no lines, seats recline better, boarding first, additional food and drinks, etc. Go...you'll be glad you did. Seat canes, or rentals scooters are great when you visit places. People at recreation areas try to be accomodating to people with special needs. Call ahead. I also carry water in a squirt bottle to stay cool with, as well as a great umbrella.

Well, re: the hydroxyzine HCL, I do experience side effects. It's probably making me too dry and probably making me a bit tired. The sleepiness wore off after a while. I'm scared to go back down to 25 mg/day, because if I do, my IC may start acting up and I do not want that.

Mack's Mom, I think you are the one who mentions MCAD on this forum, right? If you are the one, just thought you would be interested in the fact that I am on hydroxyzine HCL 50 mg/PM, 1/2 of a xyzal(anti-histamine) in the AM, and a singulair, 10 mg in the afternoon. I also take a nexium before dinner and a tagamet before bed. There's several other things I've done, all added over a period of time, but maybe, for me, a piece of the "POTS puzzle" has been the H1, H2 blockers? Oh, yeah, I also get allergy shots once every two weeks. When I'm really wired but tired before bed, I'll pop an expired 5 mg pill of clonazepam (klonopin). I think this pill really helps a lot, unless I take it every day. I try to limit this medication to no more than twice/week since it works best if I do not become acclimated. It's also helpful for my restless leg syndrome. It seems to balance out my nervous system, to some extent.

I just survived the hottest day I can remember for a while. High humidity, high temperature, and code orange (bad air). Methods used: Stayed under an umbrella Had a fan plugged in and turned towards me (though it was blowing hot air) Drank continuously - Gatorade....and the most helpful beverage of all COLD COCA COLA I never drink that stuff, but the caffeine in it really helped me. Squirted myself with water frequently. Didn't move around much. I'm so glad I could finally survive something like this. Yesterday, I nearly went into heat exhaustion, but I knew to get into the AC as quickly as possible and to stay there. I have really been stubborn and pushing myself lately. After years of fear, I've decided I don't care, this is my life, this is it, and I intend to push myself to the utmost...sitting, standing, being outside in the heat, whatever. I know I have my limitations, and sometimes I overstep my bounds (like making myself sick yesterday), but today was another day, and I pushed again. I can be really stubborn sometimes. I'm not saying this is the way to go for everyone. It's something that has become a big part of me post-POTS......to test my limits...I fail....I do it again. I refuse to let this condition "kill" my spirit. I've seriously been in the "I'm fighting this thing with everything I have" mode lately. I'm a stubborn mule. Oh, well. Just thought I'd share.

I've called my pharmacist about expiration dates. She said it has something to do with losing potency due to opening/closing a bottle which allow in humidity, heat, temperature fluctuations. Apparently, some meds can go "bad", some just lose potency, and others ????

Haven't there been "code orange" air alerts in NJ? I attribute my dizziness to poor air quality, full of ozone...not to mention the high heat and humidity. We are not like normal people, and tend to overreact to changes. I'm sure you'll figure it out. Yes, weight loss can cause issues.

I'd be cautious before assuming that MSM is helpful for many different things. It certainly did nothing for my acne, nor did it help several other things mentioned in the article, like cortisol issues or dehydration. I believe it is known that people who have degenerative, arthritic-type problems may find this supplement a benefit. It helps ease the inflammation. My mother was told to use this years ago. People on the IC forum suggested this, and I've been using it ever since, along with other things.

I take one glucosamine/MSM 3 X/day. I've been on it for years. It's helped another condition I have called interstitial cystitis. What is it supposed to be good for? I didn't read the article.

I've had two "attacks" since the dawn of my POTS life. Both times, I was extremely weak (not the "normal" weak), extremely dizzy, a la vertigo, felt like I was going to throw up, and poop at the same time. Not fun. Actually, my bowels would empty, but I never threw up. Looking back, I figure it was some kind of "adrenaline response" of sorts, kind of like an extreme case of "fight or flight", except I was unable to do either one. But, what do I know? One time, it was right before a house move while I was still working part-time, a very stressfull time for me. The other time was also during an extremely stressful time for me. I was relatively "new" with the POTS diagnosis. My husband was in Europe for 10 days. I, all alone, had to get up at 5AM daily to go down two flights of stairs and walk two dogs. I had to drive one dog to the PET ER, and ultimately put her to sleep. Needless to say, I was extremely depleted. So, in my case, I attribute my attacks to extreme stress. Only you know what you are going through, and how you are responding. Only you know if there are any preceding triggers. It would be near impossible for anyone on this forum to give you a accurate picture of the cause of your crises. I hope you figure it out, or at least, learn what to do, or what to expect. I may be wrong, but I suspect in my case, if it happened to me again, I would tell myself "Oh, I've had this before. I'll make it through again." Actually, it is so nerve-wracking to experience this, that I wouldn't wish it on my worst enemy. I hope I never have this again. And, I hope you don't have this again either. ETA....I'm assuming that you are aware of possible food triggers, such as tea coffee, chocolate or other caffeine-containing foods. Also, be sure your foods are in their original state, not processed and without chemicals, if possible. Another thought, don't let your blood sugar go into major highs and lows. IOW, don't wait and get real hungry, and then ingest a donut (full of sugar) or candy. Stay away from additives and preservatives, if possible. Also, I hope you are not on any decongestants or other meds that can trigger this response in you? Hopefully, you are not ingesting any "ginsing" or other supplement that could mimic a stimulant? Maybe your responses are triggered by a "certain time of month"? I'm assuming you have already been tested for hyperthyroidism (overactive thyroid)?

I've often wondered what some of these medications can do to permanently alter the nervous system? Maybe, for some of us, these drugs do more harm than good? Though, obviously, some people can take them without any problem. We're overly sensitive to medications anyway. Maybe, some med pushed us "over the edge" because of our predisposition to overreact....who knows?

There are ways to "tolerate" the heat better, and I use them all. Eating ices, ice cream or a cold beverage does wonders for a few minutes. Keeping a water squirt bottle with me and squirting myself, my clothing and my head are a must. I have my handy, dandy, gold reflector type umbrella with a black underside, purchased from Target...I love it. Covering the head with a cool covering or, as someone said, a "cool wrap" bandanna used by bikers. Cool vests (which I do not have.). And minding your symptoms and coming in for a breather in the ac once in a while. I cannot go outside unless I "squirt myself" with water. I may look weird, but it works for me.

Funny you should say that crying helps. I have the opposite effect. Crying brings out a mast cell response (or something?), whereby I'm more symptomatic, i.e. stuffy nose, runny eyes, than before. I actually try to avoid crying because it sets "off" this kind of allergic response.

I view the situation as follows: the medicine is helpful I feel better my body "adjusts" I'm back to square one It's almost as if my body does not want to remain feeling better. It's a nuisance. I stay on all my histamine inhibiters because of allergies, but I must say, every pill can have its side effects.

Lieze, Not having read all your posts, I wanted to chime in that I suspect it is possible to have both POTS and anxiety at the same time. I suppose both can be treated as well. Just a thought.

Are you currently under the care of a doctor for your emotional well-being? Are you taking any recreational or prescription drugs that can affect your thinking? You sound like you need some help in dealing with your issues, someone who is a person, not someone on a computer. Do you have a therapist or psychiatrist whom you see? If not, please seek help from a professional. Tell me you've done it. Praying for you.

A common response I get from a physician who doesn't know.........SILENCE. I've come to the conclusion that there is a LOT that the medical people do not understand. In your case, I suspect interacting with the right kind of specialist might help. But, who can that be? Do not stop looking or trying to find the right doctor to help you. God bless!

I want to preface this post by saying that I am not a doctor, nor do I have the info necessary to determine your POTS triggers. That said, your first post mentioned several items that would have triggered me: hanging up laundry, mopping the floor, standing and waiting for someone, possibly lifting a child(?), anxiety about your unexplainable symptoms, too much activity, too much stress, etc. One thing for certain is, that if you have a diagnosis of POTS (I don't know if you do), by definition, your body has problems adjusting to normal, everyday activities, and you are prone to exaggerated responses to almost everything. In your case, and I do not know your case as well as you do, you may be trying to do more than your body is capable of. You may need to come up with some alternatives. Maybe that's not possible?? I hope things settle down for you. It's difficult when everything seems to be happening at once, and your body does not cooperate. ETA, from my own experience, tranquilizers (benzodiazpines) were the best at helping me to relieve symptoms, but......I cannot take them continuously because if I do, they become ineffective, and I become prone to an exaggerated anxiety response when it almost time for the next dose. Also, withrawal from them caused exaggerated anxiety.

I've been on a proton pump inhibiter (PPI) for years, as well as an H1 blocker. What that means is, I've either been on 20 mg prilosec or 40 mg nexium/day. I also take tagament (H1) before I go to sleep. Symptoms or not, side effects or not, these medications are a necessity for me. BTW, I take Calcium supplements, and liver pills 3X/day, both of which counteract the possible absorption/nutritional issues that the PPI may cause. I cannot imagine living with constant esophagitis and gastritis. If you are not treating these conditions, you can end up with a precancerous condition called Barrett's Esophagus. You may wind up with pains in the chest mimicking a heart attack. Maybe, in some cases, the reflux is a result of delayed gastric emptying, IDK?

Bending and Stooping, Does anyone have difficulty with this? Yes, me. I avoid it at all costs.

teachr4k, Before I knew I had POTS, or maybe before I had it, I was sent to the Hopkins "dizzy clinic" and given exercises to train my body. I wonder if this is the same as the "vestibular exercises" you are referring to? The exercises I did helped my body adjust to motion, head turning without feeling as dizzy. It obviously had nothing to do with orthostatic intolerance.

Simmy, Stand firm on your belief that you are justified in receiving disability, and I'm sure the SSDI will come through. BTW, on a good day, I avoid squatting or bending over. Obviously, I despise picking things up from the floor, or doing anything of the sort. It's part of my condition. I have gone for months getting breathless from standing, and unable to sing in church. Then, mysteriously, I'm better. Unpredictable for sure.