Aa
Situation has gotten much worse
If anyone remembers me from 5 months ago or whenever it was, a lot has changed. Thanks to you guys I did find a good doctor to get help, but things only turned out worse now. I was put on several different medications and the only thing that improved was my blood pressure with the help of Midodrine and something else, the meds worsened the tingling that I already had as it was continuous all day. The meds never really treated my illness and only helped my BP to an extent, also my symptoms didn't improve.
A few months ago my dad was let go from his job so he lost our health insurance and couldn't afford to take me to my doctor, since then I haven't seen her and I was supposed to get an MRI done to check if I still had a sinus infection that I had 2 years ago apparently, I've learned that sinus infection that I most likely have is still there and also worsens the pressure in my head. I was also put on a new medication that was also an anti-depressant but wasn't used for that reason, I didn't see an improvement but tingling did get worse.
Well so finally a few days ago I stopped taking my meds because the tingling was getting unbearable and it wasn't helping me enough, as I couldn't even exercise either, the negative of not taking the meds anymore is that my blood pressure will be even lower now. The pressure in my head and lightheadedness kept worsening daily, but very recently (yesterday or today) I developed a new symptom that feels like I'll just fall over even if I lay down. The pressure in my head is giving me headaches and bothers me even lying down, I am currently partially bedridden as its very painful and dangerous sitting or standing up too long. Lying down on my back isn't as bad but its still quite painful, I am unable to exercise now and avoid getting up as much as possible.
I understand being deconditioned with dysautonomia will only worsen the illness but its near impossible to be active as the only thing I might be able to do are stretches in bed. Eventually I'll probably end up completely bedridden since no one can find me a real treatment, but even telling you guys this is painful for me so I'm losing options of what I can do physically. Even if my dad could afford taking me to the doctor again, I'm in no condition to go out anymore unless I don't have to get up at all, the car ride to the place is over 30 minutes and its on the 2nd floor so its just too much for me... I don't know how much time I have before I'm fully bedridden but there isn't much I can do about it, I'm trying to apply for disability benefits and my dad is also trying to get a new health insurance. By the way I'm only 17 years old but turn 18 in 5 months or so.
Symptoms are: Lightheadedness, nonstop pressure in head, tingling, low blood pressure, fainting, lack of breathe, racing heart, extreme fatigue, falling over feeling, headaches due to pressure in head, brain fog, ringing in ears and more...
A few months ago my dad was let go from his job so he lost our health insurance and couldn't afford to take me to my doctor, since then I haven't seen her and I was supposed to get an MRI done to check if I still had a sinus infection that I had 2 years ago apparently, I've learned that sinus infection that I most likely have is still there and also worsens the pressure in my head. I was also put on a new medication that was also an anti-depressant but wasn't used for that reason, I didn't see an improvement but tingling did get worse.
Well so finally a few days ago I stopped taking my meds because the tingling was getting unbearable and it wasn't helping me enough, as I couldn't even exercise either, the negative of not taking the meds anymore is that my blood pressure will be even lower now. The pressure in my head and lightheadedness kept worsening daily, but very recently (yesterday or today) I developed a new symptom that feels like I'll just fall over even if I lay down. The pressure in my head is giving me headaches and bothers me even lying down, I am currently partially bedridden as its very painful and dangerous sitting or standing up too long. Lying down on my back isn't as bad but its still quite painful, I am unable to exercise now and avoid getting up as much as possible.
I understand being deconditioned with dysautonomia will only worsen the illness but its near impossible to be active as the only thing I might be able to do are stretches in bed. Eventually I'll probably end up completely bedridden since no one can find me a real treatment, but even telling you guys this is painful for me so I'm losing options of what I can do physically. Even if my dad could afford taking me to the doctor again, I'm in no condition to go out anymore unless I don't have to get up at all, the car ride to the place is over 30 minutes and its on the 2nd floor so its just too much for me... I don't know how much time I have before I'm fully bedridden but there isn't much I can do about it, I'm trying to apply for disability benefits and my dad is also trying to get a new health insurance. By the way I'm only 17 years old but turn 18 in 5 months or so.
Symptoms are: Lightheadedness, nonstop pressure in head, tingling, low blood pressure, fainting, lack of breathe, racing heart, extreme fatigue, falling over feeling, headaches due to pressure in head, brain fog, ringing in ears and more...
And yes of course I was seeing a specialist, all the doctors I've been to before just seemed to think it was anxiety and could be ignored. She wasn't a bad doctor at all its just my situation is very complicated, and when I meant "dangerous" I was referring to the risk of fainting not death. its bad enough I feel like passing out just sitting up, so yeah I don't want the risks to be higher regardless, you never know what could happen when you pass out and its not a pretty feeling.
In POTS patients, sodium will not usually increase the heart rate. The reason why your heart rate goes up when you stand is because you are not getting enough blood because the blood is all going down into your feet. Sodium will make your body retain more water which will mean your blood volume goes up, causing your pulse to not go so high. When you stand up and it goes up high it isn't "dangerous". Over years and years, yes this causes a strain on your heart and it can develop into problems later in life, but for a couple years this isn't "dangerous". The only way it is dangerous is if it causes you to pass out and hit your head on something. I have a resting heart rate of over 100 and when I stand, it can get up to 160. Why don't you think that 5g of sodium would equal a few liters of water? Was the doctor you were seeing a dysautonomia specialist?
sorry to hear you are having such a bad time dealing with all of this, I agree with some of the coments you are way too young to have this and should be enjoying life like anyone else your age. We'll pray so you feel better soon!
I too had the terrible headaches and pressure, it was horrible, I could only lay down as that was the only thing that made it a tad better. That was my first year. Now 3 years later I am better but yes my first year I spent it laying down most of the time. Now I do remember that I took 500mg of Magnesium and that alliviated some of my head pressure symptoms and light sensitivity, worth chequing with your doctor and see if it is ok for you to take it, I used to take it at night and it also helped me sleep better.
My blood pressure goes high instead of lower so once the Clonidine helped regulate that I very seldom get the headaches, my head definitely feels much more clear now but I still have episodes where I need to lay down but I have now learned to read my body better and to do or not do things that agravate it.
Hoping you can find something that will give you some relief!
Karin
I too had the terrible headaches and pressure, it was horrible, I could only lay down as that was the only thing that made it a tad better. That was my first year. Now 3 years later I am better but yes my first year I spent it laying down most of the time. Now I do remember that I took 500mg of Magnesium and that alliviated some of my head pressure symptoms and light sensitivity, worth chequing with your doctor and see if it is ok for you to take it, I used to take it at night and it also helped me sleep better.
My blood pressure goes high instead of lower so once the Clonidine helped regulate that I very seldom get the headaches, my head definitely feels much more clear now but I still have episodes where I need to lay down but I have now learned to read my body better and to do or not do things that agravate it.
Hoping you can find something that will give you some relief!
Karin
Sodium does indeed increase blood pressure, but you guys are forgetting it increases heart rate since its making the heart work harder, dysautonomia patients with a high heart rate is already dangerous and when I test my pulse when I first stand up it goes up to 130 at worse sometimes. I'm not saying I shouldn't have any sodium intake but too much wouldn't solve the problem and cause an unbalance between sodium and water. I don't think 5g of sodium would equal a few liters of water. It seems whatever treatment or advice someone gives comes with flaws like these, I don't think there's even a solution to my situation as my doctor during the 5 months I was seeing her, couldn't do more than higher my blood pressure with drugs to an extent where it still dropped and had no change in my symptoms.
For the last 10 months or so I have been doing exercises at my house and even on a machine until I couldn't tolerate it anymore. It seemed as if I was able to do less and less everyday instead of more. Currently I only do stretches in bed which really doesn't count as physical activity but I don't know how to stop the worsening of my illness.
Although the fainting issue may be possible to treat, the symptoms I get are a lot worse than the fainting itself and that's what the main issue is here.
For the last 10 months or so I have been doing exercises at my house and even on a machine until I couldn't tolerate it anymore. It seemed as if I was able to do less and less everyday instead of more. Currently I only do stretches in bed which really doesn't count as physical activity but I don't know how to stop the worsening of my illness.
Although the fainting issue may be possible to treat, the symptoms I get are a lot worse than the fainting itself and that's what the main issue is here.
Okay, I looked it up and every gram of salt (sodium chloride) is 40 percent sodium. So if you had 10 g of salt, you would be having 4 g of sodium. So my 12 g of salt a day equals 4.8 g of sodium. You said mayo says to get 5000 mg (5 g) of sodium, so it sounds like we agree!
I was talking about the difference between salt (sodium chloride) and sodium. A certain number of grams of sodium is many more grams of salt.
5000 mg of sodium = 5 g and I drink about 3 liters a day of mostly water but that includes all non caffeinated beverages. It has helped me more than I can say, mostly just to " feel better" and more like myself.
Hi, This is just awful that you are having to go through this at such a young age. I'm so very sorry. But I just wanted to tell you that I just came from the Mayo Clinic about two weeks ago and I was told, since I can't do the salt tablets to eat a ton of pretzels and at least 2 and a half liters of water a day. Not easy to do, I know. NOt saying that's going to fix everything, but just thought you should know. I was also given a lot of calf muscle execises to do, which helps keep your blood from pooling. You can find them on the internet I think also. But I know it's hard for most people to stand, so this is a dilemma. Hang in there. I was bedridden off an on for about 3 years or more and am starting to feel a little bit better. I hope it gives you some hope.
I would say that large amounts of sodium when you are young and not eating high fat (which usually goes along with high salt) is totally fine. To put it in perspective, I get 12 g of salt (which is less grams of sodium, I don't remember the actual conversion) which consists of 2 liters of IV half normal saline a day (9 g salt) plus 3 g of salt into my J tube. Salt does help the problem of blood pressure dropping. Also, 1 liter of fluids a day is no where near enough fluids. A normal person without a dysautonomia should drink at least 2 liters a day, and I would say that someone with a dysautonomia needs to drink even more.
Woah... well that much could make a difference indeed but it wouldn't solve the problem of our blood pressure dropping, although even too much sodium is bad for anyone .
I was eating salty foods but was told at the Cleveland Clinic that we need 5000 mg of sodium each day. I was not getting nearly that much. I have increased my intake by taking salt tablets and eating VERY high sodium foods ( Soup At Hand by Campbells is a good one) and it has made all the difference.
Hi
I can most definately relate to what you are going through as your symptoms especially the chronice head pressure and lightheadedness are what I suffer from the most. I know how unbearable it is and how it can keep you on your back for weeks....I had to leave my job in Feb..because of it..I have been dealing with this for 3yrs....just recently tho I have made some headway. Kind of by coincidence......after having a lumber puncture done to rule out some diagnosis I developed a spinal leak and had to have a blood patch done....when I suffered the leak it ended up mirroring exactly the symptoms I was already suffering, especially the head pressure! after getting a blood patch done several days later the pressure was almost completely gone....it only lasted 2 weeks but it was bliss!!! Soooo I just had my 2nd blood patch done again almost a week ago and again the pressure and lighteheadedness is better.....the dr,s think it could be a spinal leak or an absorption issue, or something to do with the spine, chiari that could actually be causing nervous system issues......what I can tell you from all of this is don't ever give up!!!!! There is an answer out there no matter how odd it may be...keep going...leave no stone unturned...keep yelling eventually you will find a dr who will listen even if its 1 out of 20 like me....good luck!!!
Bren
I can most definately relate to what you are going through as your symptoms especially the chronice head pressure and lightheadedness are what I suffer from the most. I know how unbearable it is and how it can keep you on your back for weeks....I had to leave my job in Feb..because of it..I have been dealing with this for 3yrs....just recently tho I have made some headway. Kind of by coincidence......after having a lumber puncture done to rule out some diagnosis I developed a spinal leak and had to have a blood patch done....when I suffered the leak it ended up mirroring exactly the symptoms I was already suffering, especially the head pressure! after getting a blood patch done several days later the pressure was almost completely gone....it only lasted 2 weeks but it was bliss!!! Soooo I just had my 2nd blood patch done again almost a week ago and again the pressure and lighteheadedness is better.....the dr,s think it could be a spinal leak or an absorption issue, or something to do with the spine, chiari that could actually be causing nervous system issues......what I can tell you from all of this is don't ever give up!!!!! There is an answer out there no matter how odd it may be...keep going...leave no stone unturned...keep yelling eventually you will find a dr who will listen even if its 1 out of 20 like me....good luck!!!
Bren
I drink at least a liter of water a day (I know its probably not enough) and trust me I eat plenty of salty foods like nuts or just plain junk food that's full of salt. I have tried 30-40 mmHg compression stockings and it didn't improve ANY of my symptoms but I understand it does decrease chances of fainting.
Hi x
I want to send my love your way and let you know that you are not alone. Your story is familiar within our community and a lot here understand what you are going through.
If you don't mind can I ask you what medications you were on and what dx you were given? I am not familiar with yoru story x
I was bedridden with POTS and am still quite severe with it now, I know how scary and frustrating it is to be only getting worse and not being able to see how it can get better.
This is probably a silly question, but are you doing the standard things to help, including drinking lots of water, increasing your salt intake? Have you tried compression stockings?
Please take a look at the links below, see if they are of any help to you insurance/health care wise:
http://www.allkidscovered.com/
http://chicago.thebeehive.org/health/paying-health-care/all-kids-children-and-pregnant-women-illinois
http://www.communityhealth.org/about/
xxx
I want to send my love your way and let you know that you are not alone. Your story is familiar within our community and a lot here understand what you are going through.
If you don't mind can I ask you what medications you were on and what dx you were given? I am not familiar with yoru story x
I was bedridden with POTS and am still quite severe with it now, I know how scary and frustrating it is to be only getting worse and not being able to see how it can get better.
This is probably a silly question, but are you doing the standard things to help, including drinking lots of water, increasing your salt intake? Have you tried compression stockings?
Please take a look at the links below, see if they are of any help to you insurance/health care wise:
http://www.allkidscovered.com/
http://chicago.thebeehive.org/health/paying-health-care/all-kids-children-and-pregnant-women-illinois
http://www.communityhealth.org/about/
xxx
just a quick thought, try your state's kidcare insurance - I think each state has it, but don't quote me my mushy mind...
Flrorida's is called KidCare, the state offers health insurance for children from birth through age 18, even if one or both parents are working.
We pay $20 a month and have never paid anything out of pocket even when my daughter had to go to the ER. It could work for you for the next 5 months or so; and if you're disabled I think it goes until a higher age.
your story sounds so familiar and many doctor's just don't understand :( I know mine doesn't so I'm lookign for new dr's. Also, I know that Cleveland clinic has patient assistance programs - Ohio residents get free care and other states can apply for assistance and it's a sliding scale fee based on income.
Flrorida's is called KidCare, the state offers health insurance for children from birth through age 18, even if one or both parents are working.
We pay $20 a month and have never paid anything out of pocket even when my daughter had to go to the ER. It could work for you for the next 5 months or so; and if you're disabled I think it goes until a higher age.
your story sounds so familiar and many doctor's just don't understand :( I know mine doesn't so I'm lookign for new dr's. Also, I know that Cleveland clinic has patient assistance programs - Ohio residents get free care and other states can apply for assistance and it's a sliding scale fee based on income.
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