ajw4790

Hiya! So, I have a few questions and probably a bit of an update... * Do you (or have you ever) taken an SSRI and a SNRI together at the same time??? I am taking the Cymbalta and Zoloft together. I was told different things, locally they say it is a no-no, and a Dysautonomia specialists office says it is regular practice. I tend to believe it is okay in patients like us, but was curious to how many others take both??? * It has been a while since I tapered to a lower dose of Zoloft, but it is just now getting warmer outside, so I am just feeling some of the effects of it for the first time... I tend to sweat a TON on my trunk. It doesn't have to be all that warm out, and I don't have to do very much. The Zoloft greatly reduced this for me, then I decreased the dosage, and it appears I am back to my old SWEATY self!!! Anyone else have this happen? What is the treatment that has worked the best for you at decreasing sweating??? I also notice that my skin in more oily etc... It is quite annoying.... * Anyone have a medication that seemed to decrease your ability to hold on to and retain water over time??? Then, even when you are off of it, the water retention does not improve??? I actually retained water quite well previously in my looking 5 mnths preggo belly, but now it depends on the day... (Don't get me wrong, I LOVE losing the belly, but it can make symptoms worse at times... ) By the way the med was Florinef!!! TOTALLY opposite reaction!!! Anyone else??? I am off of it now, because of the water loss and blood sugar spikes. The drs. office didn't even think that it could spike blood sugar, but the nurse looked it up while on the phone, and imagine... it is one of the less common, BUT possible side effects. (And this was an ANS specialist! urrggghhh!!!) I have more questions, but I will wait until later!

Angela, Hi! I am not an expert or very knowledgeable on this subject by any means, but I thought I would take a stab at it. Hopefully someone else can add in some more info for you. I think what it is saying is that he believes that getting these symptoms after being sick with viral meningitis, that your immune system turned on itself (autoimmune). So, then your symptoms are more autoimmune in nature, rather than hyperadrenergic or small fiber neuropathy related. Instead the autoimmune reaction is occuring further up the chain at the ganglion level. Small fiber neuropathy is neuropathy that occurs distally or further from the body (hands and feet and works inward). With something like this the body is attacking itself closer to the spinal cord at the ganglion level (bundle of nerves coming in/out of the spinal cord). Some ganglia are purely autonomic. This is where some people get the blood test for the AChR antibodies. This can tell if this is what is occuring, but is not necessarily always positive. (I think... so, it could be negative and they may still say this is what is going on). I think Mestinon is used some with people with this diagnosis. Also, IgG may also be used? The one thing I read said that the autonomic autoimmune ganglionopathy is more or less an acquired immune system meditated form of autonomic failure. But, I am not sure that this is the same as Pure Autonomic Failure (PAF). But, I think overall the thought process is (I think) that the meningitis caused a reaction in your body. It is causing your body to attack itself. The main place that it is attacking is near the spinal cord at the ganglia. (The spinal cord and brain are covered in a layer known as the meninges, (hence, meningitis). Then, whatever is controled by the ganglia it is attacking is what is causing the symptoms. I am having a hard time putting together words and thoughts so hopefully that makes some sense, and is accurate. Don't take it word for word, but as a possibility as to what he was getting at. I am sure he probably ordered all the blood tests and that he will be waiting to see what those say. This is one of the blood tests that goes to Mayo and normally takes 2 weeks to a month to get back. So, if you got some of your blood tests back this may have not been included yet. I am sure you can call them and ask them about it if you do not have another appmt. scheduled in the near future. I hope that you find more answers on this soon!

Hi, I have had three TTT's and never had the injection. The places I went did not do it. I think it is something that is "going out of style", because it is considered by many to be a false positive and not show what they are trying to see from the test. I would not worry about the injection. If the place you go still does use it, just tell them that you only want a TTT with no injection. You can tell them you don't want it. Your diagnosis should be clear without it. If they are not comfortable with that, then that is not likely the place to be and then find another dr/clinic that is more experienced. It should not be a problem. I wouldn't worry!

Congratulations! She is so cute!

Hi everyone! I was at the pharmacy (Walgreens) looking around in the baby aisle at the pedialyte etc. and I came across pediatric electrolyte strips that you let dissolve in your mouth (like the Listerine or mouth freshening strips). They are fast acting etc. At first glance I thought there was a significant amount of sodium and potassium in them, but I think that is for a whole pack (so I am not sure on dosage???). But, I thought it was a neat idea, and easy to have in ones purse! BUT, I guess I didn't look close enough until I got home and they do use artificial sweeteners in these. Urrgghhh! I don't like how all Pedialyte type products have the artificial sweeteners... it is annoying. But, I do (now thinking about it) think I have seen more of a sports quality form of electrolyte replacement in the strip form... I am going to have to go back and look to see if I can find those. So, I thought I would let others know that these strips are out there if you can tolerate the artificial sweeteners (I can't b/c of migraine). I really like the convienent idea behind it! Oh well!

Hi, I am unable to work and am on medical leave from grad school. I will likely not be able to return to program I was in or function in the career that I studied for. I am still unsure where to go from here... Here is a link to a similar past thread that I found helpful when I first started posting here. It has some of the "older" posters and some who no longer post. But, it is great to look at the topic again due to there has been many people join since this thread. http://dinet.ipbhost.com/index.php?showtopic=9310&hl

The ANNOYING saga continues... So, I had the throbbing bone pain a week ago due to an allergic reaction. It seems to be one of my body's "go to" allergic responses if I come in contact with something that I am REALLY allergic to... I have other allergy symptoms along with it, just this is the most annoying/painful of them all. SO... I called the allergist that seemed quite informed and helpful before to tell her about these symptoms and ask what I should do when they occur? Do I take allergy meds? Pain meds? So, after talking to her nurse a couple of times, they said that it was NOT allergies (even though happened at same time of other allergy symptoms), and only occurs during these times. So, it is not allergies, and they do not know what it is, but if the pain is that bad it should really be checked out. So, I am supposed to call my PCP to schedule an appmt. (just saw her a week ago), so that she can "work it up". The thing is I had the bone pan when I went to see my PCP that day, and ALREADY discussed it with her! (and I told them this... they didn't care) My PCP does not believe it is bone pain and that it is tennis elbow!!! That is a repetitive use injury, and it is my LEFT arm, and I am RIGHT handed. Plus, nothing else fits. Yeah, it is pain in my forearm, but it doesn't mean it is tennis elbow. I studied this stuff in grad school, I know the difference. It is ridiculous! I just keep getting passed around and NO help or answers!!! The pain is DEEP! She thought tennis elbow fit because I am tender at the elbow due to it being a fibromyalgia tender point, but it is not the same place or pain. But, once I said that was tender there was no turning back! It has to be tennis elbow! UGGGGHHHHH!!!!! I am so OVER crap like this!!!!! I tolerate pain pretty well, but this was a 6-7 out of 10 pain! I mean if this went very long and if I did try ibuprofen and it didn't work I would go to the ER for this. And I have not went to the ER in my life! (thankfully!) But, they seem to not understand! Is there anyone else with a similar reaction when they come in contact with an allergen?????

Hi! How are things going? Have you gotten any answers etc? Hope things have gotten a bit better!

Hi, Moving slowly and giving myself time to wakeup. Drinking fluids. If your bp tends to be really low this time of day you can do the drink a glass of water rapidly (within 5 or 10 min) to get the pressor response to help increase your BP. Also, planning meds accordingly. Some take them a 1/2 or so before getting out of bed... Also, just making sure to take the meds that make you more drowsy at night and the ones that help BP/HR etc. at the time that gives you the most benefit throughout the day. Also, this is where the whole tilting of the head of the bed is supposed to come in to play... Not to say I am a fan (see my recent post). BUT, it is supposed to decrease amount of fluid lost to kidneys overnight by allowing it to pool, AND by sleeping tilted it is theorized that it keeps the ANS more RAMPED up overnight. So, by not allowing your ANS to relax as much overnight it is primed and ready for when you wake up. So, then your HR, BP, etc. are supposed to stay more consistent through the night. (Not sure I explained it exactly correct or that this theory works, but it was what I was told.)

Hi, I am not sure... Right now my brain is kinda foggy! So, you were referring to that exercise should expand your blood volume OVER TIME, right? Also, it has to be endurance exercise (not entirely sure what you are doing, but it probably fits). Also, not sure if you are going just once a week if that is enough? When it does, it is increasing plasma mainly and not so much in the way of red blood cells. This would all occur to an improvement in the efficiency of blood circulation in the body... stronger heart, increased venous return from increased muscle tone etc. So, then there would be a need for a greater volume of blood. (Trying to find a way to explain how I understand it... ) Part of what is important is what is your BP prior to exercise? Is your diastolic going up 20 mmHg or more? If so, then exercise should be stopped by having a cool down period, and stopping. The pulse pressure is more or less always supposed to increase with exercise, and not decrease. This seems to be more of the problem... that your systolic doesn't seem to rise and your diastolic has an increased reaction. So, no matter what many of us have a poor reaction to exercise (in whatever way). Yours seems to show up in your BP, not sure what your HR was? Are there a lot of position changes that you are doing that could account for the "odd" BP? Have you had a stress test done to look at your response to exercise? You may want to although I am not sure it will help anything in the long run. I know a few years ago I also had "odd" BP reactions very early in exercise. I think it was my DBP increasing over 20 mmHg way too fast. I would not worry about it increasing your blood volume. Even if it did I am not sure that that would really "solve" anything. This doesn't mean don't exercise, but find an exercise that works for you and your body. If you are having an excessive response to an exercise, your body is not tolerating it well, and is telling you to back down a level or change what you are doing. Not sure if that make sense or helps!?

Hi, I am not sure about any answers concerning this, but I wasn't sure what Hypophysis was and looked it up. Hypophysis is also known as the pituitary gland. So, you may find more on the board by searching for pituitary gland.

Hi again! Thanks!!! I have also been having quite a bit of higher blood sugar readings and my BP seems lower resting. I am getting a orthostatic BP decrease when standing that is greater than my norm, but not bad, but I have felt more woozy when I get up to fast many times now (more than I have in recent past). It is so odd to me that my stomach is so noticbly smaller and my pants are a lot looser... It seems like such a backward reaction!!! I am considering call the dr. tomorrow, but I am not sure where that will get me??? I only wish I knew what all of this means!

Hi! I am always quite brain foggy! It is worse when I am more symptomatic or with med changes etc. But, for me the brain fog and related cognitive issues have been some of the most debilitating. I do have better time of day etc. like you described (like most of my symptoms- are lesser later in the day).

Hi! I am not sure I have much to add, as I am not sure I have the same thing. I am sensitive to the suns rays, but because they are hot and so bright. There was another topic recently along the same lines that you may want to check out. http://dinet.ipbhost.com/index.php?showtopic=12124&hl=

I just LOST another 3-4 lbs!!! Anyone have any ideas on why my response seems so backward???

Hi again! After my poll here, I am not much more convinced that this works for most of us. I think I will wait, and put off buying anything. Depending on how my living arrangements go and what I have accessible in the future, I may give it a trial, but it does not sound promising. Thanks for everybody's input!

Hi all! I started Florinef 4 days ago. I was prescribed 0.1 mg a day, but decided to split it for the first week to work up to the 0.1 mg. All in all I don't have many complaints about the med trial yet. I am just concerned or confused that I seem to almost be having the opposite reaction than what is supposed to happen... Not irregular for me, but I thought this meds action was so straight forward, I wasn't expecting the opposite to occcur. Has anyone else had any of this happen??? For one I have LOST weight (I was quite worried I would gain more). It appears to be water weight. PLUS, my weight stays more consistent through out the day. Before it would change 5-7 lbs during the day, now within 1-2 lbs. My bloated stomach is a LOT less bloated!!! I feel like I have a little less urge/need to drink as much water. I also seem to lose more water during the day through urination. Not, sure if it makes sense, but I feel like it is regulating what comes in and out better. I think I hold on to the water if I need it, but if I don't need it as much then it is excreted. I don't feel like I am excessively losing fluid. And this is just 4 days?! I still have the insomnia I have had for over a week prior to starting the med. I have been a little tachy at times, but not bad. I have headaches/migraines, but I figure they are more due to the rainy weather and time of the month. I tend to want to lay down after taking it, but it is not my best time of the day anyways. I get minimal stomach upset and make sure to take it with food. Otherwise I haven't noticed anything to bad, just that I seem to be having an odd opposite reaction??? ALSO, I do feel like I have more energy and less orthostatic (I really don't want to jinx myself though ). I have been doing much better at being able to get things done, and have increased endurance. This is with the INSOMNIA!!! Sleeping a couple hours here and there (poor quality sleep too!). Things are FAR from solved, but I am interested in why I have such an odd reaction? Anyone else with similar experiences???

Maxine, Hi, I am glad that you have an appt. set up. Has the bulge increased your instability? That is what worries me. Could you call the EDS dr. to see what he advises? He may be more familiar with it and how to treat it in your scenario? Does it seem to be getting better or worse? I hope you get some answers soon! Take care of yourself!

Maxine, How are you doing??? I hope you found something out today! Keep us updated!

For POTS diagnosis the requirement is a HR of at least 120 bpm and and an increase of at least 30 bpm from supine to tilt (anytime during). Syncope is not a requirement and has more to do with NCS (Neurocardiogenic Syncope). But, syncope can occur with POTS, but not required for diagnosis.

Earthmother, Glad things are looking up! Yes, they turn on a dime! Hope things continue in a positive direction! Firewatcher, I have to say almost your WHOLE post fits me perfectly!!! Whole nights of insomnia, able to start to fall asleep in wee hours, then DO NOT want to wake up! By 4:30-5:00 start to be 1/2 normal. Then, feel better, more productive etc. over night, and it happens YET AGAIN! Rinse and repeat!!! I have been trying to sleep at around 11:00 pm. Finally fall asleep and am up by 1:30 or so wide awake like clock work. Can't sleep then until wee hours, sometimes more like 9:00 am. Thenn recently I am lucky if I can get some sleep. Either constantly wake up, unable to fall asleep to begin with, or wake up wide awake. The humidity and temp has a lot to do with this as well. My whole life, practically from the time my parents brought me home from the hospital as a baby, I have had these really weird sleep schedules. In elementary school I would stay up til 10-11:00 reading in bed. Middle school things just got worse. By high school I would crash when I got home until dinner. Wake up and eat. Then chill, do homework etc. And I would be up until 1, 2, 3 in the morning and unable to sleep. I DISCOVERED caffeine (coffee) in jr or sr year, and it helped daytime significantly. But, I was still so backwards... If I do the whole don't sleep during the day to regulate my schedule, then I tend to just be up for days. I really seem to be programmed to be awake at certain times, and they are not "normal" times. I just had a "disagreement" with this again with my PCP. I tell her my sleep is awful (too much insomnia). Then she is like do you sleep during the day? I am thinking how too answer, and say, yes that is when I sleep. She is like well that is your problem! I tell her I have always been this way, but she does not understand! Then she says what about caffeine? I drink to much according to her, but that is how I stay semi-alert during the day. I drink powder tea through out the day, its not coffee... And I explain I had these problems prior to my ever drinking caffeine, and have went off it for 3 mnths before and things got worse not better! Because then I am that much more tired during the day. She really didn't understand and thought I was crazy between that and my arm pain. She actually tilted her notes up close to her and started scribbling a lot! (not good ) She also tried to convince me the arm pain I was having was tennis elbow and not bone pain!!! I was like I think after my education I know the difference between tennis elbow and bone pain!!! She also didn't believe that it was allergy induced! I think she was close to locking me up! She did not believe me!!! I do have an appmt with a sleep dr in May, I hope the dr. understands these disorders and is helpful, and not another sleep hygiene queen. No naps! No caffeine! No sleep! Urrrgghh!!! Oh, well!!!

Jennifer, Hi! I know what you are talking about. It can be caused or related to many things. One thing I think it partially goes along with is the "haircut syncope", I forgot the real name... But, I had it when I was younger, and still do to a lesser extent. It has something to do about touching/messing with the scalp and hair and triggering a reaction with the trigeminal nerve, which in turn causes a vagal reaction. This is more likely to be the cause if you get tachy or lightheaded with it. Also, I get it with migraines and headaches. I also am on a daily basis since I was a young kid very sensitive to anyone touching my hair/head. My scalp especially can be very sensitive. I have to watch how I put my hair up. Used to not tolerate it up or anything in my hair tugging on it. My hair gets very long because I don't want anyone touching it. Everything with my hair and scalp is sensitive and brings on symptoms. I also have had many meds make this much worse. SO, if you are taking different meds or doses this can also be a cause. The worst that I could not stand was Midodrine (like someone was tugging me by my hair) and it can occur now on the Cymbalta. I think I had at least one other previous med I remember it causing this affect, but I do not remember what it was. From what you each described Jennifer and Thankful, I think you are describing slightly different things for the most part (with some overlap). I am not sure that what Jennifer describes sounds like neuropathy? But, Jenn you do have some neuropathy don't you? So, it is a possibility. Zaps I am not real familiar with... But, I started Florinef today, and as I laid down for a nap I think I may have felt one. Not sure, it was weird... If it is zaps down the arms etc. it can be from Chiari. I had a instructor that had that. Every once and a while she would have a zap sent down her arm and would have to shake it out.

Normally at least a week. But, I would say days to weeks. Longest without any significant improvement is probably about a month. Depends...

Hi, Your post reads like all people with POTS had a stressor that caused POTS (trauma and/or bacteria/viral infection). There are many people on the board that this is not the case for, like Rachel said. There are many of us it is genetic, and not in the we have a genetic tendency towards it and a stressor triggers POTS. There are some of us who have other conditions that we were born with that results in POTS. For many of us it is a fact of life, and we have to work to treat the symptoms. They do not know what causes my SFN. I have EDS, which adds to the blood pooling problem. But, for those like me, we just don't know, and according to drs. we may never know, and have to work to treat the symptoms. That is why I do not spend much time or energy looking for a "cause". It is what it is...

Thanks for your responses! He was very adament that 2-3 inches would not be enough and would need to be 6-10 inches. I still wonder where these people are that get substantial relief from their symptoms by tilting? I guess they don't post any more???