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Newly Diagnosed Pots


mrach
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I always take something to help me sleep. I don't think there are many dangers, but I have read many replies on this site that a little bit of pampering goes along way when it comes to air travel. On this last trip, I found that wearing a pair of sleep eye things really helped to cut down on nausea associated with light, noise, motion etc. Plus, you should never attempt an airport without wheelie luggage and the determination to stop and ask for a wheelchair if you encounter any line that is not actively moving. What may look manageable can quickly become a very sick event if the line stops.

Good luck!

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Here's my standard response for this question - a link to the article "How to Avoid Deep Vein Thrombosis on Long Plane Flights" from the American Council on Exercise. I use this advise and I give it to ANYONE I know going on a long plane trip. I personally know two people (neither with dysautonomia) who have suffered problems from this - one was extremely young and healthy and had a severe blood clot in her leg and the other suffered a debilitating stroke. Of course, you should also check with your physician.

http://www.acefitness.org/fitfacts/fitfact...aspx?itemid=290

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Request bulkhead seating! It will give you more leg room to move around in. Mayoclinic even gave me a letter to get bulkhead seating when flying. You might want to get a letter from your doctor. Or call the airlines and ask to speak with a supervisor ahead of time and tell them you have a medical condition - explain what happens to you. A supervisor can assign your seat in bulkhead ahead of time.

Get up and walk around if you can during your flight. Like everyone else said, increase your fluids even more and extra salty foods. If you wear compression stockings those will be helpful, and use a wheelchair if you are going to have to walk long distances.

Personally, I'm a nervous flyer so I always take something before I fly so I'm relaxed the whole trip. I also bring an eyemask to wear. It comes in handy when you want to drown out everyone around you and sleep or relax.

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Guest dionna

i fly a lot. i usually just hurt on take off, turbulance, and landing. up the salt and fluids. be sure to let your flight attendants know. i have fainted on flights before- i have also been denied flights due to too much fainting. good luck.

dionna ;)

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Many thanks to all of you for your answers. Can you tell me what are your symptoms or how did they start because the doctors just have a suspision but they have not confirmed POTS yet and I am suffering for the last 8 months since all this started. Tell me about your daily life as well, please. Thank you

i fly a lot. i usually just hurt on take off, turbulance, and landing. up the salt and fluids. be sure to let your flight attendants know. i have fainted on flights before- i have also been denied flights due to too much fainting. good luck.

dionna :)

Thank you, can you tell me more about your diet and the vitamins you are taking. How was your diagnosis confirmed

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Heya,

*deep breath* it's a long story.

I first started showing POTS symptoms last summer when I was living in Hawaii. They mainfested as dizziness, fatigue, and chest pain, and palpitations but the dizziness was by far the worst symptom. I went to several doctors, but they couldn't find anything wrong with me other than in increased heart-beat on standing, so they told me I had an anxiety disorder and prescribed xanax. Well, the xanax made things much worse, and I ended up fainting as a result of it. I ended up in the hospital on the cardiac ward because after fainting an ambulance was called and the EMT's saw my blood-pressure was 60/40 and I couldn't speak or hear. After getting IV fluids and spending several days in the hospital, my BP normalized a bit when I was laying down, but as soon as I stood up, it would go back to the 80's/50's and my heart rate would go from the low 60's to the 140's-170's. My doctors knew something was horribly wrong, but had no idea how to help me, so I was sent home and told to stay in bed.

I was bedridden for about 6 months, and eventually had to move back to the east coast beacuse the doctors in Hawaii had given up on me. In January I went to Vanderbilt and was admitted for a 2-week medication trial by Dr. Biaggioni. While I was there I was officially diagnosed with POTS and Neurally Mediated Hypotension, and was put on Midodrine.

Since then, the midodrine really helped some of my symptoms and I was able to get out of bed, and even go to school part-time last semester. However, my symptoms have worsened over this past summer, and now we're suspecting that I have Lyme disease as a cause of my POTS and other neurological symptoms.

My POTS/NMH symptoms are listed below:

1. Severe increase in heart-rate when I stand >40 bpm

2. Chest pain, dizziness and nausea upon standing

3. Decrease in systolic and diastolic BP when standing (unmedicated)

4. Heat intolerance

5. Intolerance to caffiene and alchohol

6. Exercise intolerance

I have other symptoms that some POTS patients have that may also be attributed to Lyme:

1. Sensitivity to sound, light, and vibration

2. Joint pain

3. Numbness/burning/tingling in hands and feet

4. Sleep disturbances (I wake up in the night with what feels like adrenaline surges that cause my heart to race and my blood-pressure to spike)

5. Visual distrubances ranging from flashing lights, to "floaters"

My treatments are as follows, some are doctor-prescribed/suggested, others are things I've learned from trial-and-error:

1. Not to stand for more than a few mintues: this means I use a wheelchair if I have to walk long distances, I use a stool in the kitchen for when I cook or do dishes, and a stool in the shower.

2. Gatorade 3-4 liters a day.

3. Tons of salt on all my food.

4. Waist-high compression hose in the spring, winter and fall, knee-high in the summer (beacuse they're so hot)

5. Eating 4-6 small meals a day, not too much fatty food or sugar

6. B-6, B-12 and folic acid seem to help me

That's about it. I really hope you find a doctor that can give you some answers! That will be crucial to your recover.

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thank you honey, can you tell me how did you fly back to USA when you were so sick.I have on top of dizziness, acute attack of frightening severe dizziness as if the world tilts sideways , blurring of vision,dry throat and horrific feeling of doom and tachycardia. nobody had a clue for the past 8 months, on monday i saw a neurologist (finally after 8 months of asking for it, i live in Canada....0 I am extremely anxious but I am afraid to take anything for the anxiety just herbs and relaxation meditation....quote name='Dizzy Dame' date='Jul 26 2006, 11:19 AM' post='60035']

Heya,

*deep breath* it's a long story.

I first started showing POTS symptoms last summer when I was living in Hawaii. They mainfested as dizziness, fatigue, and chest pain, and palpitations but the dizziness was by far the worst symptom. I went to several doctors, but they couldn't find anything wrong with me other than in increased heart-beat on standing, so they told me I had an anxiety disorder and prescribed xanax. Well, the xanax made things much worse, and I ended up fainting as a result of it. I ended up in the hospital on the cardiac ward because after fainting an ambulance was called and the EMT's saw my blood-pressure was 60/40 and I couldn't speak or hear. After getting IV fluids and spending several days in the hospital, my BP normalized a bit when I was laying down, but as soon as I stood up, it would go back to the 80's/50's and my heart rate would go from the low 60's to the 140's-170's. My doctors knew something was horribly wrong, but had no idea how to help me, so I was sent home and told to stay in bed.

I was bedridden for about 6 months, and eventually had to move back to the east coast beacuse the doctors in Hawaii had given up on me. In January I went to Vanderbilt and was admitted for a 2-week medication trial by Dr. Biaggioni. While I was there I was officially diagnosed with POTS and Neurally Mediated Hypotension, and was put on Midodrine.

Since then, the midodrine really helped some of my symptoms and I was able to get out of bed, and even go to school part-time last semester. However, my symptoms have worsened over this past summer, and now we're suspecting that I have Lyme disease as a cause of my POTS and other neurological symptoms.

My POTS/NMH symptoms are listed below:

1. Severe increase in heart-rate when I stand >40 bpm

2. Chest pain, dizziness and nausea upon standing

3. Decrease in systolic and diastolic BP when standing (unmedicated)

4. Heat intolerance

5. Intolerance to caffiene and alchohol

6. Exercise intolerance

I have other symptoms that some POTS patients have that may also be attributed to Lyme:

1. Sensitivity to sound, light, and vibration

2. Joint pain

3. Numbness/burning/tingling in hands and feet

4. Sleep disturbances (I wake up in the night with what feels like adrenaline surges that cause my heart to race and my blood-pressure to spike)

5. Visual distrubances ranging from flashing lights, to "floaters"

My treatments are as follows, some are doctor-prescribed/suggested, others are things I've learned from trial-and-error:

1. Not to stand for more than a few mintues: this means I use a wheelchair if I have to walk long distances, I use a stool in the kitchen for when I cook or do dishes, and a stool in the shower.

2. Gatorade 3-4 liters a day.

3. Tons of salt on all my food.

4. Waist-high compression hose in the spring, winter and fall, knee-high in the summer (beacuse they're so hot)

5. Eating 4-6 small meals a day, not too much fatty food or sugar

6. B-6, B-12 and folic acid seem to help me

That's about it. I really hope you find a doctor that can give you some answers! That will be crucial to your recover.

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Hi, glad you've found this site! Welcome! I don't have much to add, just that, as Gwendolyn has said, you may want to arrange to have a wheelchair take you from gate to gate. This may make things alot easier for you to manage. I hope you manage well! Laura.

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I had a wheelchair (my own) that I took from gate to gate, however it's easy to arrange for one. Just call the airline and let them know you'll need assistance. I was so sick when I flew that my family dipped into savings so I could fly first class so I could lay down the whole time. However, I still got HORRIBLY sick and we came close to diverting the flight when I started to have severe chest pain, vomiting and palpitations.

My case was pretty extreme though, as I was very unstable at the time, and my doctors warned me that the flight could make me very sick. Honestly, I don't think it was the flight that made me sick, but rather all the stimulation of the airport and the stress of the move.

Hopefully you're not in such a bad way :) Just take a deep breath and don't get too worked up over it. Most POTS patients, with salt and extra fluids, do just fine flying. Do make sure you get plenty of rest after the flight, though, as most of us experience a "lag" effect when we've overdone it, and you may feel fine during and just after the flight, but might get sick later without a bit of rest.

Good luck! And let us know how you fare.

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  • 3 weeks later...

Thank you very much.

quote name='mrach' date='Jul 26 2006, 01:04 PM' post='60038']

thank you honey, can you tell me how did you fly back to USA when you were so sick.I have on top of dizziness, acute attack of frightening severe dizziness as if the world tilts sideways , blurring of vision,dry throat and horrific feeling of doom and tachycardia. nobody had a clue for the past 8 months, on monday i saw a neurologist (finally after 8 months of asking for it, i live in Canada....0 I am extremely anxious but I am afraid to take anything for the anxiety just herbs and relaxation meditation....quote name='Dizzy Dame' date='Jul 26 2006, 11:19 AM' post='60035']

Heya,

*deep breath* it's a long story.

I first started showing POTS symptoms last summer when I was living in Hawaii. They mainfested as dizziness, fatigue, and chest pain, and palpitations but the dizziness was by far the worst symptom. I went to several doctors, but they couldn't find anything wrong with me other than in increased heart-beat on standing, so they told me I had an anxiety disorder and prescribed xanax. Well, the xanax made things much worse, and I ended up fainting as a result of it. I ended up in the hospital on the cardiac ward because after fainting an ambulance was called and the EMT's saw my blood-pressure was 60/40 and I couldn't speak or hear. After getting IV fluids and spending several days in the hospital, my BP normalized a bit when I was laying down, but as soon as I stood up, it would go back to the 80's/50's and my heart rate would go from the low 60's to the 140's-170's. My doctors knew something was horribly wrong, but had no idea how to help me, so I was sent home and told to stay in bed.

I was bedridden for about 6 months, and eventually had to move back to the east coast beacuse the doctors in Hawaii had given up on me. In January I went to Vanderbilt and was admitted for a 2-week medication trial by Dr. Biaggioni. While I was there I was officially diagnosed with POTS and Neurally Mediated Hypotension, and was put on Midodrine.

Since then, the midodrine really helped some of my symptoms and I was able to get out of bed, and even go to school part-time last semester. However, my symptoms have worsened over this past summer, and now we're suspecting that I have Lyme disease as a cause of my POTS and other neurological symptoms.

My POTS/NMH symptoms are listed below:

1. Severe increase in heart-rate when I stand >40 bpm

2. Chest pain, dizziness and nausea upon standing

3. Decrease in systolic and diastolic BP when standing (unmedicated)

4. Heat intolerance

5. Intolerance to caffiene and alchohol

6. Exercise intolerance

I have other symptoms that some POTS patients have that may also be attributed to Lyme:

1. Sensitivity to sound, light, and vibration

2. Joint pain

3. Numbness/burning/tingling in hands and feet

4. Sleep disturbances (I wake up in the night with what feels like adrenaline surges that cause my heart to race and my blood-pressure to spike)

5. Visual distrubances ranging from flashing lights, to "floaters"

My treatments are as follows, some are doctor-prescribed/suggested, others are things I've learned from trial-and-error:

1. Not to stand for more than a few mintues: this means I use a wheelchair if I have to walk long distances, I use a stool in the kitchen for when I cook or do dishes, and a stool in the shower.

2. Gatorade 3-4 liters a day.

3. Tons of salt on all my food.

4. Waist-high compression hose in the spring, winter and fall, knee-high in the summer (beacuse they're so hot)

5. Eating 4-6 small meals a day, not too much fatty food or sugar

6. B-6, B-12 and folic acid seem to help me

That's about it. I really hope you find a doctor that can give you some answers! That will be crucial to your recover.

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Please wear support stockings! A few years ago I had to fly and my ankles swelled so bad I couldn't stand the pain. Walking was excruciating! The swelling lasted the entire time I was gone (6 days) and when I flew back I thought I was going to die from the pain it hurt so bad.

Here's a pic of my ankle when I got home. I am normally 5'11" -140lbs, so my ankles are normally skinny.

Just looking at the pic brings back the memory of that severe pain.

swollenankleji5.jpg

My skin is all screwed up too and that remained after the swelling went down.

If you increase salt and don't wear support stockings you are asking for trouble. No alcohol either.

That's just my experience, but it was SO awful, I thought I'd share it.

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