radiohfan23

2 days in: - Doing ok, kinda weak/tired feeling and very sleepy - feel a little too uneasy to nap but slept well once I finally fell asleep last night - I yawn excessively which is common for Lexapro whether you suffer with dysautonomia or not - The thought is that with increased brain activity your brain is overheated thus triggering yawns which actually cool the brain (after some research I learned that excessive yawning for any reason is not a result of oxygen deprivation as once theorized - that myth has been medically disproved) We'll see whether this dissipates as I get adjusted to the medicine - Appetite is decent (I normally have a poor appetite in general) More to come as I keep going...

He is actually quite knowledgeable of them and realizes that it can unfortunately be trial and error before you find the right one. He offered paxil 5mg moving up to 10 when comfortable but since I'd used lexapro in the past he said that would be fine since others have used it successfully. From what I've learned Zoloft isn't as popular for 'Potsies' but i'd like to hear from others with experience.

Background: 30yr old male onset at 27ish - non hyperadrenergic (peripheral dysautonomic) pots. Currently unable to work with sever fatigue, nausea, unable to stand very long, etc. I am also taking DDAVP at night, mult vitamins, going off gluten and have been exercising on recumbent bike 3 or 4 days a week. About 5 years ago before I had POTS i had a panic attack and was given lexapro 10mg and only stayed on it for about 3 weeks before stopping since at the time I didn't really need it. I simply had a random panic attack after a very stressful event. For the next two years didn't have any issues until POTS set in. I had tried Zoloft with awful results - lost 20lbs and was crawling out of my skin after about a month at 50mg - This was before I knew I had POTS. I took my first dose at 2.5mg at 11pm last night (9/22) - had some difficulty falling asleep but was able to get a solid 7 hours - woke up with a strong headache (different from migranes) in the front of my forehead - which got milder after a few hours - appetite so far is ok - was able to do a light 10 mins on the bike and get a decent stretch and some ab exercises more to come as I progress = please contribute any questions/insight that may be helpful for the anyone interested

Thanks for sharing this. I want you to know I feel just awful for you. Relationships are certainly tough even when you're healthy! I developed POTS about a year before my wife and I were married and struggled through everything. She's exceptionally supportive but there are times when she just can't handle it (very understandably). Just please please know that it's not you it's the illness that is causing problems. As a guy myself I can definitely say that there are caring compassionate men out there who will love you for who you are and accept how different your life is because of your illness. It may sound corny but it is true. Take care and always know that you're not alone and if you need to do it vent don't hesitate, you've got a lot to handle and we can all relate.

I had problems with Zoloft too. Caused me to lose my appetite and was very weak and anxiety increased intensely. Worst i've ever felt in my life. I went off of it after a short while and feel better. Am going to try lexapro instead.

Naomi, just wanted to thank you for doing this. I think polls like this can be invaluable in terms of research.

I think you may be onto something with florinef. I had reactions also and from Dinet's description of medications it states that sympathetic activity may increase with florinef. Definitely worth looking into.

Hi, you pose the same question I had when first discovering I had POTS. My doctor is quite good and diagnosed me on my initial visit with pulse rate changes and visible pooling. I also noticed that my BP rose slightly when standing and also felt i had hyper pots so I asked for a Tilt Test. During the test I was negative for hyper as my norepinephrine stayed low even though the BP went up. I also have had hyperhidrosis since puberty interestingly enough. Do you have a solid doctor who can administer a Tilt Test and check your adrenaline levels? Sometimes in Tilt Tests they don't measure it so be sure to ask. Best of Luck, Joe

I found a naturopathic pharmacy where they do their own compounding. When my Mom explained POTS and my symptoms he recommended this RelaxMax. I've done the research but always feel more comfortable when fellow POTsies share their experiences with the different ingredients. Here's the ingredients listing: Magnesium 75mg Inositol 2000mg Tauring 500mg GABA 100mg L-Theanine 50mg Stevia leaf extract 60mg I'm particularly curious about the GABA as I've seen others interested in some old posts but am wondering what updates people who take it would be kind enough to provide. It seems to make sense in helping with the anxiety issues at worst. And I haven't seen much on Inositol. I'm picking some up today and will be trying it soon and will keep updating this topic as I go. FYI, I have the non Hyper POTS and am currently only taking DDAVP at night. Thanks, Joe

I struggle to go also. I was too embarassed to sit while the old ladies next to me stood up, haha. Anyways, I found an online mass that I at least try to view weekly. Many sites offer this especially for home stricken people due to illness and you can watch at any time. Something to think about. Makes me feel a little more normal.

I've been getting this also, non stop. Can't figure out whats going on but will keep you posted with any progress. I am a lot weaker and have lost weight again along with this so I'm hopeful it's diet related and I can find out what it is an eliminate it.

Hi Lieze, I wish I could do more to help directly as you definitely could use a break... I totally understand the feeling of waiting to die. I know it sounds awful to say it but for me that has been the reality of how i'm feeling. Although there is definitely no connection to POTS being fatal thankfully, it does often feel like you're just deteriorating to that point. So I totally understand where you're coming from. One thing I would recommend is to maybe try to get them to watch the changes movie. I'm lucky to have a loving and supportive family who "understand" this condition but watching this was truly more productive than me just explaining that i'm always tired and dizzy and feel very ill. You can find it on youtube if you search for the full title: CHANGES: Pt. 1, Living with Postural Orthostatic Tachycardia Syndrome (POTS) part 1 There are three parts. Best of luck, I'm thinking about you. Joe

Thanks, and i find having a drink to be beneficial also. It's calming enough - so long as I don't get dehydrated. I'm not sure I agree with a high dopamine level being related to POTS. In fact Vanderbilt is enlisting for a study now to administer carbidopa which is a Parkinson's drug used to increase plasma dopamine levels. The reason there is no evidence of a correlation is because it hasn't been measured properly. Urine tests are not accurate. In fact many parkinson's patients aren't measured because it requires a spinal tap. Dopamine is very difficult to measure. I know norepinephrine levels can be elevated in those with hyper pots upon standing but wasn't aware that dopamine was also elevated (i'll need to look into this more). Also, alcohol works because of its effects on neurotransmitters. Specifically Serotonin, GABA and Dopamine.

I'm so glad you brought up this topic because I think like a lot of others here the ability to handle stress and subsequent social anxiety is an issue for me. I often avoid social environments whereas before becoming sick I used to do fine. I wasn't the life of the party or anything but was always able to enjoy myself in crowds. I've been doing a lot of research with regards to neurotransmitter irregularities and I've become quite interested in dopamine deficiencies. From the research I've done I've learned that social anxiety disorder usually presents with low dopamine levels. It's also correlated with autonomic control, sleep disturbances, the ability to relax/feel pleasure, CFS, Fibromyalgia, etc. There are plenty of sites out there, here's a simple one: http://chronicfatigue.about.com/od/treatingfmscfs/a/dopamine.htm I'm meeting with a doctor who specializes in neurotransmitter repletion this week so hopefully I'll get some answers.

Hi, I get similar issues - not always sure why this happens. Can I ask what medications he's on just in case there may be a reaction. Does he eat a particular diet? High fiber/protein, etc?

I absolutely feel for you both as this is one of the worst parts of POTS. But you both describe it beautifully. Most of us experience this in that our bodies simply can't handle stress as they're supposed to. What happens is that our bodies (which are so much weaker to begin with) go into fight/flight on the tiniest of stresses (physical or emotional) and they get stuck in sympathetic mode. To the normal person their bodies will return to parasympathetic once they're out of danger and they're recover where as we don't. We get into this trap of overwhelming anxiety which is brought on by a dysfunctional autonomic system. Please realize that this is a physiological dysfunction you're experiencing and it's not all in your head or anything like that. Unfortunately we all experience this due to our condition. The ability to handle or tolerate stress is very minimal because of POTS. Things that help me: - Take a benzo during episodes - there is nothing wrong with taking this medicine in my opinion. I met with a psychiatrist about this and was worried about addiction, but by taking a xanax low dosage as needed it is not addictive - Expanding blood volume helps tremendously with the chest tightness. I had a bad episode and had to go to the ER and they gave me an IV which helped dramatically. Now when i get dehydrated i start to feel uneasy very quickly for no reason - I take magnesium and B vitamins which seem to help also You are not alone in this and it is not all in your head. Unfortunately there are mean people out there but that's their problem. They'll have to deal with that themselves and they don't have to endure what you do. Hang in there and please try and find some peace knowing that feeling like this is not your fault. Joe

My Progress Update, So I'm about 3+ weeks in, sorta. I've done my best to stick with the protocol exactly but am not yet able to complete it as instructed. I'm simply not physically able yet to complete all the workouts as designed. However, I am happy to say that I am definitely improving. A few weeks ago I could only do about 10-15mins of the recumbent bike where as now I was able to do a nice 30 minute workout. It felt unbelievable to complete that workout but it was very difficult to recover from, so I can see this starting to work but I have a long uphill battle in front of me. I am getting very encouraged although it seems at first I had gotten much worse and was worried that this was doing more harm than good. What i've realized that my heart became badly deconditioned simply because of having POTS and the limitation of general exercise throughout the day. I can definitely feel that my heart is laboring and the recovery time is long and difficult after workouts, but even that is improving. What I've learned thus far that helps: - Wearing compression stockings during workouts helps (especially when moving between machines) - Warming up and cooling down is very important - its a good time to relax and let your body get slowly adjusted - I have a gym within walking distance and my car had broken down for a few days and was in the shop. The days I had to walk to the gym I was in terrible pain trying to workout and my HR was much higher (chest pain, fatigue, dizzy, etc.). I try and stay totally relaxed and slow my heart as much as possible (if at all possible) before working out - Do the best I can and track everything meticulously - sleeping patterns, med schedule, weather, etc. - even a one minute improvement from one week to the next is a huge deal - or even knowing that although i feel horrible i still made an effort and tried, it may have only been 5 minutes but that is much better than not getting any movement that day because it is at least helping my blood circulate - Hydrate heavily during workouts - I fill a large water bottle and some low sugar sports drink and make sure to drink it while exercising (definitely have something like this readily available - typically i use propel (gatorade makes it and there's virtually no sugar - tastes good too) - Have a good recovery routine ready - when i get home i have lots of fluids and a protein shake available almost immediately (as soon as i can drink it) to keep my blood sugar level - it is important to get some nourishment soon within a workout. This has been really tough because I typically get pretty nauseous after workouts so i just get a little something in me once I can eat something - Actually one of the best things that has started happening is that my appetite has gone way up after having recovered from worked out. I actually hunger for food and I can feel my digestion improving which is s huge relief in that my appetite is usually non existent and I have to force food down like a lot of us experience. - Mornings have been horrible to be honest. I typically workout in the afternoons. I wake up to anxiety and fast heart rate. Although I started taking ZMA a supplement body builders use and it gets me to sleep deeper and not wake up as panicked. For the women I would look into this before taking it because it's meant to improve testosterone levels and may not be good for women. But i would definitely recommend looking into Magnesium and B6 for better deeper sleep. I realize this is a lot but I wanted to be thorough so I hope this helps. I'll keep posting updates in the coming weeks. Best of luck to everyone and please let us know how your doing and we can all help each other get through this! Joe Here's my med/supplement routine: High protein hypoglycemic diet which levels your blood sugar throughout the day and while you sleep (takes a week or so to adjust to this - had nasty nausea, anxiety getting adjusted) B vitamins + multi once a day ZMA at night Desmopressin nightly Creatine monohydrate before workouts (I take the liquid that you dissolve under the tongue)- I took this for years when running track in college and it vastly improved energy, stamina, strength and recover time and it's helping me a great deal with the protocol now.

Thanks for sharing this. I went to a chiropractor who xrayed me and found subluxations as well. I went through some treatments with him for a few weeks but it didn't really do much for me unfortunately. After a while I learned he wasn't very good so hopefully this is something they can treat for you and improve on your symptoms. I'm very interested about what treatments they'll use for your adrenals. I was given adrecor an adrenal supplement as well as Adapten All but am not sure whether they've helped any. Best of luck on your follow up as I'm very happy to hear you seem to be in good hands.

Thanks for keeping us posted! I took this prior to being diagnosed and had similar problems getting acclimated but it did wear off after a short period, i believe a week or 10 days maybe. I stayed on it for maybe a month before stopping because I got scared about getting off of it down the road. However, this was probably prior to me having POTS come in full force. If it worked now for me with POTS symptoms I wouldn't hesitate to stay on it. And the first days are definitely the worst as you're unfortunately dealing with. Hang in there and best of luck, I really hope this works out well for you... Lord only knows you deserve a break!

I'm assuming there is already some thought to this, but I wonder how much hormonal changes have to do with the onset of POTS? Aside from Hyper POTS which is genetically linked, a lot of us are unsure how and why we were inflicted with this condition. When I first got ill I went to see an endocrinologist who determined that I had a low level of testosterone and was about triple the high range of estrogen. I'm a 29 year old male with some family history of hormonal imbalances. I was treated and the hormones went back to normal ranges (not sure whether they've stayed there) but I still experienced symptoms which I still endure. I had been repeatedly tested by different doctors and this was the only abnormality they found. I sorta pushed it off as coincidence but it dawned on me that since mostly women develop this it seems as though estrogen may be at play. Specifically young girls who are experiencing a significant increase in estrogen production in the late teen years (puberty) when a seemingly majority of POTS patients are girls of this age. Also, it seems that many women develop POTS after pregnancies which is also a time of immense hormonal changes. I'm totally speculating on this and I'm sure there are many of you out there who have looked into this and I'm curious as to what more has been learned. Thanks for any feedback. Joe

Hey, I just started yesterday myself. Looks pretty daunting but I'm off work for a while so I will be able to commit to it. I've done some light workouts (the recumbent bike has been good to use) but nothing like this. Although, I was an athlete all my life prior to all this and ran track in college. The onset was definitely not de-conditioning - if anything i overworked my body as i was training for a half marathon. The other things I've learned that can help are to use compression stockings up to the waist - I just ordered a pair of under armour compression tights. They will help keep the blood circulating up to your brain more readily and also help with workout fatigue/recovery. You may be surprised how well they work - try working out without them and with them, the difference can be quite remarkable. Wearing them throughout the day helps also. I also take cold baths after workouts which also helps recovery. As your body warms itself after being cooled it helps carry away the lactic acid. 5-10 mins in cold water up to the waist is plenty. And it doesn't have to be unbearably cold - just run a cold bath (no ice is needed). And it actually will constrict your blood vessels and will feel pretty good (once you're out of the cold water of course). I'll keep adding to this post to let people know how I'm progressing. I would recommend also that if you're waiting for the program do some recumbent bike/rowing machine at a comfortable pace, even if its just a few minutes - get a good stretch in also (I've gotten very inflexible).

I also was in training for a half marathon when symptoms began and was in very good shape leading up to it (I've been an athlete all my life). Although I do notice now that exercise (what i can tolerate - recumbent bike/rowing machine @ very light levels) does help but it's certainly far from a cure.

I have rapid emptying and also have a hiatal hernia. I got an emptying study done and it showed the fast emptying. I was pretty certain that I was experiencing gastroparesis but the test revealed my stomach was fully emptied before 45 minutes. From what I've researched it makes sense that the rhythm of our stomachs are effected by our autonomic nervous system going out of whack. And I would guess this is what you're experiencing as well. I get very panicky, sweaty and a sinking scary feeling in my chest after meals. It's all pretty frightening. I take a PPI which i think helps - they're over the counter now and are pretty harmless. I try to also avoid simple sugars and eat high protein meals with complex carbs. My gastro did pretty much nothing about it and gave me the same explanation that I was stressed and to go see a shrink. Total waste of time. Do you ever vomit? I never do despite constant nausea. Although i belch constantly and always during meals - it's really uncomfortable, but i'm sure you know that all too well. Joe

Hi Lynne, I am a new patient of Dr. Tullo (last December) and I like him very much. He was able to diagnose me in his office with a simple sitting/standing test to notice my elevated heart rate. He's very knowledgeable and a nice guy. He took the time to answer my questions and is sympathetic to this condition. I know there are a lot of his patients on here so you'll hopefully hear from others as well. I'm glad you found him because I really think you'll be in good hands. He's trying lots of medications until/if something works and he won't force you to take anything that gives you bad side effects. He's studied all of Dr. Grubb's work and likes to think of himself of the 'Dr. Grubb of the east' - which I would agree with. Please don't hesitate to ask any specific questions I'm more than happy to help. Best of luck, Joe

Lieze - Sounds like you're going through quite a bit and I think a lot of us can empathize with what you're feeling - it’s a desperate lonely existence but there are absolutely things that will help, so hang in there and definitely use these forums for guidance, I have found so many wonderful people that are experts who can drastically improve how you’re feeling. It took me nearly 2 years to arrive at a POTS diagnosis and I still have to get more testing done to determine the exact type. I also have trouble gaining weight - one of my worst fears is losing weight and wasting away. At my worst I had lost about 35-40 lbs (down from 205 - a healthy weight for me at 6’2”) and felt too sick to eat, it's just unbearable and indescribably torturous. Eventually, I was able to put weight back on by changing my diet. For me sugar and dairy cause lots of problems and make the nausea unbearable. I try to eat high protein and a lot of animal meat and eggs. But definitely try to pay attention to your diet. I actually have dumping syndrome which is a fast emptying of the stomach which is exacerbated by sugary drinks. Do you ever vomit? I always feel some level of nausea even on the best days, but never vomit. If this is what's happening you may have trouble digesting the Ensure, but hopefully that's not the case. In terms of anxiety everyone I’ve met with POTS has very severe anxiety and yes it is definitely the common misdiagnosis. One of the basic symptoms is the inability to manage any type of stress good or bad. Even good happy events or even loud noise, bright lights, movies, etc. cause problems in most of us and can result in anxiety. There are a lot of good discussions on distinguishing whether certain episodes we're suffering from are anxiety or POTS attacks, I would highly recommend reading up on those. In my opinion I think we’re much too vulnerable to handle most stresses. In terms of your doctor situation is he just your GP? I had to go through many doctors who either knew of dysautonomia or didn't. I was commonly misdiagnosed with anxiety consistently or they would just say ‘you just need to exercise and drink more fluids’ - what a joke. I found a specialist who treats many of the people on this forum who officially diagnosed me and is working on different treatments. He's pretty good and if you're in the NY City area I'd recommend him. But there are certainly others out there. Does your pulse change when lying to standing even if you're feeling ok and not as anxious? Even on good days with POTS you'll see the pulse increase to 30BPM+/-. For me my resting pulse is typically low 50s to 70s lying and up 30 bpm standing almost immediately. On bad days resting can be up in the 80s or 90s and will rise over 120 when standing. But my BP doesn't change much. BP drop or increase is common but not necessary to make a diagnosis. Another thing you should do is measure the pulse in the shower; it typically goes up to 150+ with me. Hang in there and keep in touch. And don't let anyone else who doesn't live in your body tell you how you're feeling or that it’s all in your head. Many "professionals" are ignorant to this and can be very mean and treat you like a hypochondriac when you're suffering a legitimate physiological problem. Take care and I hope you get some much needed relief very very soon! And I completely agree on the meditation it does offer relief.