JeffKohrman

Unfortunately, I've been forced to choose between this answer, and my family. This decision came shortly after buying an $80 hookah. Joy. Anyway, i just wanted to thank everyone who has given me guidance/suggestions over the past week or so. I'll still be bringing this information to the attention of my POTs doctors. Thanks again! Jeff

CoQ 10 is supposed to strengthen your heart, and increase energy, so it does make some sense. Glad to hear you're doing better!

Quick update: I went back to the Pillar (the Hookah Lounge), and was so excited over the whole ordeal that I forgot my BP cuff. Anyway, here's what happened. My pulse started out at 130 sitting, and gradually slowed to 90 sitting, after about two hours. My joints don't hurt, my head didn't hurt, my chest doesn't hurt, I'm not dizzy, and I'm feeling pretty energized. This time I seem to be more light sensitive, and much more susceptible to stress headaches, and my stomach is hurting more than beforehand (which may or may not be related). Also, my chest is a bit tight, almost asthmatic feeling. I'll be trying it one more time, to see if the results are similar. Thanks for all the help and support guys!

I get that too, if I sleep too little or too much, I'm pounded by my POTS symptoms. Does anyone else get that if they oversleep?

Never tried Kava, and I probably won't try any of the commercial products, since they generally use the leaves now. I've heard that the leaves can cause liver damage, it's the roots that are the safest. Jessica - I know Pulmonary Fibrosis is very serious, so I'm also looking at a local company's product, Holy Smoke, which is made with spices rather than bagasse. It's a very small company though, so it doesn't have an online identity yet.. I'm very sorry to hear about your grandmother and mother. I hope your mom's doing well now!

I have this problem as well. Prilosec has never helped it, since I don't think it's food/stomach related. I've heard it could be heart related if it's always there, or unrelated to eating.

I've had symptoms my whole life, and have been punished for every one of them, until just last year when I was diagnosed with POTS. My mother was suddenly very understanding, but my father doesn't seem to get it, so he just doesn't talk to me. Makes it a little awkward since I still live with them, heh. It feels like I've lost a parent, which is never easy. Anyway, my point is that you really aren't alone, as you know. But it doesn't seem to get easier when incompetence rears it's ugly head, does it. At least we have the strength of friends backing us, no matter how far, or digital they are, eh? Hope all else is well!

Wow, that's great! My drs. have talked about Lyrica, but are wary of starting anything until they've got me good and diagnosed. Glad it's helping you though!!

Moderation is the key, which is particularly difficult when dealing with barbituates. I'm really stuck on what could've caused such wonderful side effects. I know that smoking is a vaso-constricting act in itself, and it draws blood away from extremities and towards vital organs, which would reduce swelling and aching from blood pooling. That would also explain why I felt cold afterwards.. But would that also make my stomach calm down, and reduce cramping? I've been told that my headaches are caused by reduced bloodflow to my head, so that would alleviate that. But could it really just be the act of smoking? I'm starting to confuse myself. Dang it. Also, my local head shop should be getting more hookahs in the next few days, and they're trying to get some herbal shisha for me too, so hopefully this weekend i'll be able to try it again.

I've had times where the nurses couldn't even hear my pulse. Weak heart some days, ripping out of my chest the next. Good times, eh?

Yep, party so hard, we all pass out

In my experience, it's generally best to do all the tests you can, or else you'll end up missing something important. I've also had both of those studies done, and they really aren't as bad as it sounds. I'm sure there has to be an alternative to iodine, for those who are allergic, and endoscopies can be done both awake, or somewhat sedated. The part that took the longest for me was waiting for the anesthesia to wear off.

It's very interesting to me that so many people have found that nicotine helps! While smoking Hookah may help me, I am in no way suggesting to anyone else that they start smoking for medical reasons! Smoking's dangerous, and any type of smoke in a carcinogen. The reasoning behind so-called anti-hookah is that the shear mass of smoke being inhaled makes a one hour session the equivalent of 2.5 cigarettes. My argument is that in one hour, you could smoke many more than 2.5 cigarettes, since the average time it takes to smoke one cigarette is 3-5 minutes, in theory, one would then have to smoke 12-20 cigarettes. Talk about chain smoking! The only reason that the shisha manufacturers can state "Tar Free" is that when used properly, you wouldn't burn any of it, keeping the tar inside of the tobacco leaves. Tobacco NATURALLY has tar! Tobacco by itself isn't necessarily good for you, just some parts of it are. I'm only experimenting with this because it's been suggested by a friend. It also happens to work for me, as far as I know, and I plan to try it again in a more controlled environment in order to assess the results. I will also be bringing my findings to my Dr., and assessing it's benefits/risks with them. Not to completely turn you off of Hookah, but I just want you to be well informed before you take such a risk. If still interested, hookahhookah.com, hookah-shisha.com, and wikipedia.org are helpful places to get started. If you don't want to bother with online research, check out your local head shop/smoke shop! Or you can just talk to me, I've learned quite a bit about it since I first heard of Hookah. And this forum is pretty danged cool, I've been putting off getting an account here for months because I was afraid to learn more about my conditions, but it's been extremely helpful to see what other people are going through!

I like to eat chips or peanut butter crackers before bed, that usually helps me get throughout the night. Not sure why, but those two things stop me from waking up like that, as well as having awful acid reflux (which i've been told is heart related).

Just a quick note; Apparently the molasses used is high in salt content. Whenever I have a terrible headache, I usually end up craving salt. Anyone else get that? I'll also be looking for some exercise DVD's, thanks! I've tried going to my local Y, but I don't do very well in large groups.. I'm actually a very shy and awkward person. The way hookahs work is by loosely filling the bowl with shisha, then wrapping the bowl in tin foil, poking small holes in the foil, and placing a red hot coal on top of that. By taking a draw from the hose, you pull the heat through the shisha, into the water, then to you. This process doesn't actually "burn" anything, it dries it out. So what you're actually smoking is the moisture in the shisha, rather than the byproduct of it's combustion. If you do end up burning your shisha, you'll know, the pleasant smooth smoke will suddenly be harsh and bitter tasting. I'm really interested in trying a tea made of the shisha too. Heck, right now, I'd probably eat it straight from the can..

I'm sorry to hear that you have Crohns, but at least it's relatively treatable, right? Don't be too surprised by the cost, I use Tegaderm on my ostomy, which is nothing but stretchy packing tape, and it's $180 a box! Everything is so overpriced because the companies making it want the highest profit margin, and tend to assume that insurance will cover it. Ugh.

Okay, so I think I'm going to do a more controlled test this time. That is, IF I can get ahold of another Hookah, I don't want to go back to the lounge, my fiance didn't love it and it's expensive. Anyway, I'll be monitoring my BP/HR as well as recording what times I wake up, any activities throughout the day, and monitoring Intake/Output. That way, I'll have all the variables written down, no forgetting some small detail which will no doubt be of the utmost importance. Erik said to look at what's in the shisha. Well, what I used consists of bagasse, light molasses, and glycerin. I don't know of any medications made of bagasse, but I have heard of Milk and Molasses enemas (ruined gingerbread cookies for me, but were somewhat successful), as well as Glycerin suppositories (no effect), and drinking large doses of Glycerin (somewhat successful, mostly nauseating). The earliest I could get an appointment with my POTS Dr. is late December. I'm trying to find any Tai Chi instructors, massage therapists, etc. in the area, but I would only be able to afford one session every other month. Financially, Hookah is looking like my only feasible option for pain management. I suppose I'll just have to wait until something comes available, and I'll return with my findings. Thanks again for all the help, everyone! And I am always open for any comments or suggestions!

On a good day for me, I can catch my breath after about 30 minutes to an hour of sitting and relaxing. As I'm typing this, my breathing is pretty shallow. Typing is also a strenuous activity for me, so that may have something to do with it. What are you thinking about? Anything stressful? Try to clear your mind, and just focus on deep breathing exercises.

I'm open to other suggestions too, such as yoga (which is a bit too strenuous for me) or tai chi (Just found a local place that offers FREE sessions!). There was a study done on Bagassosis not too long ago (the files said Valid and were dated 2007), thanks for reminding me, Amy! The results said that out of 500 light, medium, and heavy smokers, only 30% of them showed signs of Bagassosis over a period of five years. A light smoker was classified as smoking 1-8 times a day, and using 150g to 250g a bowl. That is WAY more than anything I'd be using, since the average bowl size at the Hookah Bar is 10g - 20g, and that lasted me over an hour. Other than that one study, the rest is on factory workers who process bagasse, and the conditions in which they tend to work in are much worse than smoking it, in my opinion. Thanks again, Amy, it was wonderful to feel that good! I will certainly be talking this over with more doctors! I understand that this is a big risk, and as such, I should be equally cautious. As far as I know, the ingredients of the shisha are Sugar Cane Bagasse, Light Molasses, and Food-Grade Glycerin. I recall molasses being somewhat helpful to my GI system, but no explanation has been given to me as to why. It's certainly worth a try to make a tea out of it! Thanks again for all the help! So far, this forum's been great!

I live in Pennsylvania, but the Drs. we've been able to work with are in Cleveland, Ohio. It's quite a drive (ride, in my case), and I end up having to take a day off for travel in each direction.

Throughout my life, I've never thought it odd to constantly be out of breath. The way I deal with it is to concentrate heavily on making very slow deep breaths, or holding my breath for a few seconds, then trying to breath slowly. I don't know, it seems to me that every persons situation varies greatly, so what works for one may not work for others. I'm sure someone on this forum has some ideas though, so don't lose faith!

Very yes! My brain is always jumping around trying to start everything at once. I can't stay focused on just one thing, or I can ONLY focus on one thing alone. I'm glad (and sorry) to hear that I'm not the only one out there who thinks they're spazzing out all the time. To date, I've found nothing that calms me down, except just going along with what my brain thinks it should be doing. *edit* I've also been diagnosed with PDD and Executive Disfunction Disorder, both of which can cause messiness, appearance of laziness, and hyperactivity. Wierd combo, eh?

I've only recently been diagnosed with POTS (within the past year), and I'm still doing testing for other problems. It's my guess that it wasn't just inhaling smoke, but the entire act. It's very methodical, and knowable, so there was no stress getting started, and no stress throughout the whole process. I was sitting in a very comfortable room, with my fiance, and felt very at ease, but afterwards, I felt pretty danged good, compared to how I usually am. I'm just wondering if it's something to look further into, seeing as I can't remember the last time I've felt that good. My body didn't ache, I wasn't dizzy, headache free, even my stomach felt considerably better (although that was the first thing to come back to normal..). I don't know, I think I'm pretty desperate to find a fix, even though I know there probably isn't one ultimate answer.

So I've been using incense for temporary relaxation for quite some time now, and it makes me feel somewhat better. My body aches less, I have less GI cramping, and I don't get as dizzy upon standing. The only problem is that I have to fill the room with smoke before I feel any effects. That, and my father has terrible asthma. This led me to look for more intense versions of incense, and while perusing a local head shop, I discovered hookah. I've done an enormous amount of research on the device itself, but not so much about POTS. Anyway, I decided to take the risk and try it. Much to my surprise and relief, it actually alleviated many of my symptoms! Now, I was smoking herbal, tobacco free shisha, because tobacco is against my religion, but it honestly made me feel better. The effects then lasted for the next day and a half. If I could do that once a week, I'd be much more likely to get things done, and much happier, but I'm already mentally addicted to it. You see, I don't know what negative effects this is going to have on me, that is why I haven't tried it since then. The herbal shisha is made out of Sugar Cane Bagasse, which is linked to Bagassosis, or Pulmonary Fibrosis, which scares the ever living poo out of me (I wish.. lol). The regular shisha tobacco contains, well, tobacco. If that were to have less health effects, I'd be willing to try it, but my fiance doesn't approve of that idea anyway. I've read somewhere that the nicotine in tobacco helps some people with POTS, but I couldn't find any solid evidence of that. Anyway, my question is this. Should I continue smoking the herbal shisha and risk the health problems, switch to smoking real shisha tobacco, or stop smoking all together? What alternatives have any of you tried/been successful with? Any information would be greatly appreciated! Thanks! Jeff