geneva

Tim, I am really sorry to hear you had the flu. Both my in-laws HAD the flu shot in October and BOTH came down with the flu and were hospitalized a week (in isolation). They both got pneumonia and the doctors say it will be weeks before full strength is restored. I know your body may just be weak and reacting to being overtaxed by the flu but be sure to let your doctor know so if you need to be checked for pneumonia they will. One interesting thing I learned is that when the first chest xray done in the ER was negative for pneumonia, the regular physician said you can't tell anything from a chest xray when the person is dehydrated. After IV treatment the pneumonia was seen. I hope you get to feeling better soon. TAKE CARE

Stacey I can understand your concern. I have had problems and it took a long time to find a way to explain. My doctor said he feels that for me the problem driving is overstimulation. My brain is trying to take in EVERYTHING from each cloud in the sky to every car, person, tree etc and then there is an overload. Noise from the highway adds to the problem. When I hit the overstimulation point I get lightheaded and know that if I take my BP it will be UP about 50 to 60 points from when I got in the car. When I am a passenger this will happen but I can look down. I also have to keep the radio off for the same reason. If I drive on our country FM roads with minimal visual stimulation I do not have the same problem. When we moved I had to retrain my brain for the 10 minute drive into the grocery store. After 2 months I was fine. But 6 months ago when they were building a new overpass on my grocery store route the lanes would be switched up and each time my brain would do a number UNTIL I had done the same route a few times. I hope you are feeling better soon and do be careful.

I am a all-over-the-map BP person as well but any stimulation--- a friend with a loud voice, my niece and nephew dropping by and playing chase with the dog, my husband having the TV too loud, or just riding in the car more than 15 minutes sends my BP up very high.....from what you wrote, you have a LOT of stimulation right now in your life!! Just remember to take lots of deep breaths, at least that is what helps me some what. Take care and enjoy your holidays!

I aim for 72 oz. water a day or at least 64 oz. water and the remainding 8 oz. from clear broth. I had a problem with flushing out electrolytes so my doctor had me use Gatorade as part of my fluid count but after a long time of doing that I realized the sugar was a trigger. So, now I drink broth instead and since it is cold out, it is a good option for me!!

I too have the same problem although over the years it has improved. I have to be careful the amount of time I spend at the PC or reading. I also found that when my Florinef dosage was higher it contributed SIGNIFICANTLY to the severity of length of dizziness and I had it often for an entire day and just sat on the couch. Now that I am on less Florinef it is much better.

What exactly is an arterial line? Sounds invasive, is it?

I haven't found any meds that help with nausea for me so I have tried a few natural ideas. As mentioned above, Peppermint tea or what I like better is peppermint essential oils. You can put some on a klennex or just inhale from the bottle directly...which is what I was doing just Sunday evening! I can usually trace my nausea to when I have overdone. Also when my BP is high I have nausea although my doctor is not sure if the nausea triggers the higher BP or vice versa. I am sure some of you might laugh at the next....but one day when I was at the massage therapist and complained of how sick I was of the nausea, she did this "thing" on points in my feet and in seconds the nausea I had had for 48 hours was GONE! I hope you are feeling better soon!

Jessica, I think what your body is telling you is that at different times it needs different levels of meds. In another topic I mentioned stopping the bb and like you found a CLEAR headedness I have not had in years. I do think for most of us sensitive to meds a small increase or decrease can have a noticeable effect. ENJOY feeling BETTER!

Wow, what a timely discussion for me. Yesterday beginning about 4 in the afternoon I started having a very bad pain in my chest -- left side (heart) but the inside area by the breast bone. I have chest pains sometimes but they are ALWAYS on the outside -- coming from under the arm. LAst night I lay down and for the next 5 hours debated do I go to the ER or not. I was more concerned than normal because it was a new location and new type pain. BUT because moving my arm, taking a deep breath could actually cause it to be worse and even pushing on it would make it worse, I kept telling myself SURELY it must NOT be cardiac. I even called and talked to an ER nurse. Like others, I have asked my doctors how in the world will I know when it is "just" POTS vs. something that could kill me? My neuro said don't sit at home and die from a heart attack just thinking it is POTS but when I asked how to distinguish the various pains, he said if it gets better when you lie down it is PROBABLY "just" POTS. The emotional rollercoaster of knowing WHAT the H___ to do in these situations takes such a toll. If you go to the ER and it is NOT heart related according to their test, AND they know nothing about POTS, my experiences have not been very good. Even my husband is amazed. At 10 I took Advil thinking maybe chest wall pain and Ativan and slept! Happy to say I woke up this morning!! But I do feel lousy. stress I am sure. I admire those of you who can ignore these episodes....trying to decide to seek help wears me down. I hope everyone has a WONDERFUL Thanksgiving. I am THANKFUL to have all who provide support through this forum.

No, I have not yet travelled overseas with OI but I have a similar situation and have been debating whether it is worth the ANS upset that I am sure will occur. I will just share with you some of my thoughts. Before POTS, I travelled internationally extensively for my job and I know how difficult the travel is on a normal body...BUT, I still would like to go. I know that compression hose, hydrating extra fluids before and during the trip (every hour at least 1 eight ounce glass is recommended for "normal" people), and getting up during the flight to move are necessary as well as using a wheelchair in the airports. Also, if there is any way you can do it, fly business class. (mileage points to upgrade?) There is so much more room as well as comfort. One of my biggest concerns would be the noise, as hyperstimulation is a real issue for me, and at least in business class, there are usually no more that 25 to 30 seats. My husband and I debate if flying non-stop 10+ hours or breaking the trip up would be better. I know I have read here or on the NDRF site, that someone said the landings and take-offs and changes in pressure affected them the most. If so, then I would think that a non-stop flight might be the better option. But since I have not flown since I have had POTS, I worry that WHAT IF I get too miserable???? It is a minimum of 4 hours over the ocean from the US to Europe....I think I would take a LOT of Ativan (LOL) On the other end of the trip, I would schedule in 3 to 4 days of bedrest! Oh, with the time change wherever you are going, you need to think about your meds and the time to take them. My doctor (pre-POTS) told me to start adjusting the time a week in advance moving the time I took them 1 hour each day to "adjust" my body to the new timezone. This works for meals too. These are just some ideas I have based on my past life and what my husband and I have discussed in depth. I hope you do decide you can go, HAVE a WONDERFUL time and will report back to us on how you do!

Hi Jessica, at one time I thought I might lose my insurance and that was scary so I can understand how unsettling this is for you. I wish I had some ideas to offer but other than what has been suggested above, I just wanted to let you know that I am thinking of you and hoping that a solution will become available before your deadline.

It is so very frustrating trying to decide if the side effects of the meds offsets the benefits isn't it? I never realized the effects atenolol had on me until my doctor reduced it gradually over the last several years. Last month I started a trial period to see how I would do without it. I was on a minimal dose because my bp would drop too low but I was shocked at how much BETTER I felt withOUT it! The first few days were rough because I had weird left chest pains and on day 2 the WORST brain fog ever but at the end of the week, I felt clearminded, much more energetic etc. PArt 2 of the plan was to start trying to exercise to recondition my heart. Previously, I couldn't do much more than exercise bike 2 or 3 times a week for 3 minutes, maybe 4 before becoming symptomatic. I am now up to 10 minutes! I really have to be even more aware of HR and have gotten myself into trouble a couple of times at the grocery etc. I have gone back to wearing compression hose and trying to ride the bike in the mornings to get things circulating and of course keeping really aware of sodium and fluids as low volume is also a problem for me. Based on the last month I am really hopeful that I can manage without bb. I know you have a really good doctor. I hope he can help you figure out something that works for you. Good luck.

I used to get that feeling especially in the early stages. I also can get that feeling due to low potassium levels occasionally. Usually it is all over but sometimes I have thought it was just POTS and when I have my potasium level checked it is low. I take florinef so I have to be careful. Just thought I'd throw that in should you also take florinef.

I was really glad to see this topic because I'm wanting to try something different this year. I usually get infections and last year we discovered that almost ANY antibiotic made POTS much worse. I'm not familiar with guafinesin....what is it and where do you find it? Health store? Also, Nina you mentioned BAtroban(mucoprin). I think that is a prescription, isn't it? Thanks for the good ideas.

I usually drink 20 to 24 ounces before getting out of bed and this helps me a lot.

I would just add to the suggestions of small meals and avoiding sugar, that I have to avoid high carb meals like pasta. Before I realized this I would feel awful and my symptoms would last for hours. Now, I try to eat some protein first at every meal and it helps. You might try keeping a food diary for a few weeks to see which foods cause the type of reaction you experienced. This helped me because I couldn't remember! When I kept track it was easy to figure out what would work better for me. Good luck finding what works best for you.

That is interesting about the knee high because the doctor who gave me mine said do NOT wear anything short of thigh high! Who to believe. At least you know that length works for you. Have any of you who have seen Dr Grubb learned what he recommends?? Also, any insight into what weight is the right level?

I am going to be taking a trip over the holidays and want to purchase compression stockings in advance so I can be ready. The ones I was first issued in the hospital were thigh high and I always had trouble with them. Are there waist ones as well?? I am sure some of you have tried different brands and styles and would really appreciate your input before purchasing. Thanks in advance!

Angie, I got really mad reading your post and the terrible experience that you and your daughter have been through. The doctor story is all to familiar to most of us. Although I don't get the seizures, I just wanted to write and tell you I am SO SORRY it is happening to you and your daughter. I know you must be frightened as well as frustrated. I will keep you both in my prayers that you get some real answers soon. all the best, geneva

I get that electric charge feeling sometimes, out of the blue. I also get the skin sensitivity every few months on my head, almost like a baby's soft spot. If I touch it, it feels like I have a bruise on the inside of my head. It is really weird but after a day or 2 it goes away. I never had it before POTS and I can't determine any triggers.

Sorry to hear you are going through this added stress, especially on a day when you are home sick. Hope you are feeling better soon.

What WONDERFUL news! He sounds like a very interested and involved individual and what he wants you to work on sounds exciting. CONGRATULATIONS!!!

I know what you mean about keeping in mind that some things may not actually be from POTS. Thankfully my neurologist has taken it seriously but when the MRI's and doppler ultrasound came back negative he didn't know where to go next. As I say it has gotten less severe and thankfully less frequent in the last 3 years but I don't know if that is due to lifestyle changes or actual improvement. I still deal with it several times a week vs daily and it takes a lot out of me because once it starts, it may last a long time. The "coat hanger" configuration is EXACTLY what it feels like and the heavy feeling is true as well. I have never fainted with POTS but when I begin to get this feeling I try to sit or lie down quickly because it is so uncomfortable and will only get worse if I continue. Do you know if Dr Low has written about the coat hanger pain?.

I could really use some help. Does anyone know of any documentation regarding neck pain with POTS? I have seen it on some symptoms lists but cannot find any specifics to provide my doctor. I don't know if there is anything that can be done to improve or not. I have had the pain since the onset of POTS and have had lots of tests which are all negative. It usually starts when I have been up too long or using my eyes too much such as sitting on the computer or driving. It begins with pressure at the base of my skull and then pain spreads to both sides of my neck. Over the 3 years I have had improvement -- weekly massage therapy helps but just wondering if anyone has any ideas on the cause or where there is more information. Thanks.

I used to have these episodes at the grocery store a LOT but only when I was standing in line. I even started to dread going but then I started taking a folding sport seat (works like a cane folded) with me. When I get to the check out I unfold it and sit while I unload my groceries and pay. I haven't had any problem since I started using a few months ago. Once I got over the embarrassment of looking like an old lady with her chair, I found it much better than having to sit on the floor. I now take it everywhere! I too, have had these episodes in the middle of the night and to me they are the most fightening.