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mando621

Woke up choking

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I woke up in the middle of the night feeling like I was choking. I couldn't swallow, and it felt like my throat was blocked. I had to get up and get a big drink of water, and tried clearing my throat. I then had trouble falling back to sleep, terrified that I was going to quit breathing (mini panic attack also happening).

 

I feel so frustrated. I think I'm going to make an appointment with my doctor and bring along the list of all the problems I'm having. I can't get in to a doctor in Madison (University of Wisconsin Madison) for at least 3 weeks, and then only after a doctor referral, insurance referral, medical records transferred, and then wait to find out who will see me. I'm also going to take along a list of the blood tests I want to have run. The rheumatologist that is in my health plan is pretty useless.

 

I keep having small panic attack feelings. Swallowing is the symptom that is bothering me the most. It hurts to eat some things because they feel like they get stuck, or even start to move up into my sinuses.

 

If there are periods of heavy activity and periods of remission, I'm definitely in a time of heavy activity. I can almost feel my hands tightening, my face also. Last night my daughter said that my hands look really old. My hands look like an 80year old's, and I'm 44.

 

Well, enough venting. Thanks for the means to let it out. Family and friends definitely don't understand, and they probably don't need to be bombarded with complaints all the time that they really can't help with. My husband is fairly understanding, but he tries to fix things all the time. This isn't something he can fix, and I can't stand to hear his suggestions when he doesn't seem to take things seriously.

 

My username is Mando because I had to quit playing Irish fiddle and go to mandolin because of a slap tear in my shoulder. Found out yesterday, that taking glucosomine is about the worst thing I could do with Sclero, good thing I wasn't taking it regularly like the physical therapist suggested. Upcoming surgery is requiring a full physical with an internist through the hospital where the surgery is going to be done, so if nothing else, maybe that doctor will be able to find out something.

 

Sorry for the rambling.

 

Mando.

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I had a problem with swallowing for a while, my tongue was coated and slightly swollen with something on the back of it that bothered my swallowing function. I think it was related to yeast or thrush. Im on minocycline and stopped that for a few days and ate more yogurt and took more acidopholis, helped alot and am now back on my minocycline. Seems to be going better.

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Hi Mando,

 

I'm relieved for you, that you will be seeing an internist and getting a complete going over. Hopefully, things start falling in place and you begin to get the answers to these questions. No doubt, lab work will be ordered at that time, too.

I don't believe I've ever heard of an Irish fiddle. I would have loved to have heard you play. My dad had a mandolin and played a bit, but it really was my paternal grandpa's and I hear he could REALLY play it!

 

You are very talented and I hope that you are able to get back to playing the Irish fiddle again, as you sound as though you truly enjoy playing it, in particular.

Keeping you in my thoughts, Mando.

 

Susie


Special Hugs,

 

Susie Kraft

ISN Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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Mando,

 

You definitely didn't have a fun night last night! What a horrible feeling to wake up like that. Have you ever been tested for sleep disorders. Sleep Apnea is pretty common and can cause one to stop breathing when they are asleep. The starve for oxygen wakes them up suddenly choking and gasping for air. You might request to have a sleep study done.

I'm so sorry for the swallowing problem. I had that for about 6 months but once I was started on an immunosuppressant, that problem went away. It came back last year when I was off my immunosuppressant for about 4 months, but it was milder. Once back on, it went away but not completely. I still have to eat slow and cut my bites into small pieces to swallow. I also found that I can't talk when I eat without choking.

I hope your doctor can help you out with this. Please keep us informed and please use this forum to vent anytime!! We all understand that it's really hard to explain to family and friends, but we here at ISN certainly understand.


Janey Willis

ISN Support Specialist

(Retired) ISN Assistant Webmaster

(Retired) ISN News Director

(Retired) ISN Technical Writer for Training Manuals

International Scleroderma Network (ISN)

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Hi Mando,

 

Somehow I've missed you slipping into our Forums. I'm so sorry. I wanted to give you a big welcome! I'm really glad you've joined us.

 

I too have woken up choking. For me it was due to GERD and I panicked afraid I was going to aspirate. I now sleep with the head of my bed raised and on several pillows. Please do make an appointment, no matter how far out it is and keep a running list of concerns and complaints. We end up being our own best advocates when it comes to our health!


Warm and gentle hugs,

 

Pamela

ISN Support Specialist

International Scleroderma Network (ISN)

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I have choked the odd time at night but only when I am in a super deep sleep. The odd time I have woke up not being able to breathe, again when I have been sleeping deeply. Going for a sleep study is a good idea. I guess I should put that on my to do list. Take care Kathy

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Welcome Mando!

 

I know EXACTLY what you are going thru with the swallowing and choking in the middle of the night! My choking was caused by severe reflux. I have had aspiration pneumonia several times because of it. Not eating for several hours before lying down and raising the head of my bed helped. It is very frightening to wake up not being able to catch your breath! I also have sleep apnea now, but the choking in the middle of the night has been going on for years and I was just diagnosed with the sleep apnea. I also have the trouble swallowing and food getting stuck. I have had several upper endos and have had to have my esophagus stretched several times. I have what they call a stricture of my esophagus (which I understand to be like scar tissue caused by the acid reflux) and the muscle of my esophagus doesn't work well to push the food down when I swallow. When food gets stuck it is EXTREMELY painful and even trying to push it down by swallowing water doesn't work, the liquid won't even go past it. As others have said, you are your best advocate when it comes to your health. I finally gave up on my local rheumatologist and went to Johns Hopkins to the Sclerodema Center there. I was very pleased with them, I know you don't live in this part of the country, but I think a teaching hospital may have more knowledgeable and thorough MDs. The rheumatologist I saw at Johns Hopkins said that sclero is so rare that most rheums never see a patient with it. I am fortunate to have a primary care physician that listens to me and works with me well. Keep pushing until you get the proper care you need! Now, I must tell you that I absolutely love the mandolin and I wish I could hear you play!!! Hang in there and let us know how it goes! smile.gif


Peace :)

Barbara aka relicmom1

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I'm up now cause I woke up choking. Argh!

 

It happens several times a week. I tried not eating a few hours before and sleeping upright but I think I choke on big chunks of air. I need to find some way to break those chunks of air down cause I seem to choke on them 2-3x/day. Once the choking starts it aggravates my throat, which leads to coughing, to more choking, then gasping for air which is real fun cause I'm already on oxygen.

 

Argh!

peanut the choking pirate


You can deprive the body but the soul needs chocolate

my HMO makes me wear a helmet...

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I made an appointment with a gastrointerologist, but I can't see him until April 10th. My HMO wants me to go to each specialist and work on fixing the individual problems. My primary doctor is hard to get in to see, and she doesn't seem to be able to put all of this together.

 

My hope is that when I see the internist from the hospital for my pre-op for my shoulder repair, she will be able to put the puzzle together and help me figure out what is going on.

 

I started taking Zantac twice a day, and it does seem to be helping with my burning mouth. That means I've been suffering with possible GERD for over 6 years. Probably time to have someone check my esophagus to make sure I don't have major issues there. I'm not overweight, I am 5 ft tall, and I weigh about 105. I seem to be so healthy, I don't get sick with minor illnesses very often. So, what would explain GERD? My mom has problems and even had errosions so she is now taking daily meds for it. She is overweight and was told that was a reason for the problems.

 

Sending out thanks for all the support from this board.

 

Mando.

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Mando,

 

I'm really relieved that your HMO feels this way. I agree totally. In/regard to the specialists, you will receive treatment that is in their fields of expertise.

 

The primary basically sets up the appointment for you to see these specialists, if you need referrals and if it's required by your HMO. To see these specialists, then, maybe the internist you will be seeing in pre-op can take you on as a permanent patient and hopefully, you can go from there.

 

Upward and Onward!

 

Hugs,

 

Susie


Special Hugs,

 

Susie Kraft

ISN Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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Mando621,

 

Your gastroenterologist should be able to help you our with Gerd or reflux issues quickly. He/She will give you the proper tests to see what is going on and treat you accordingly. The doctor can check for bowel or any intestinal disorders that may be occurring. I also weighed in at about 110 and had real issues with GERD. Weight had nothing to do with my disorder. It was from the Scleroderma. I am a fellow mandolin player. My love is the flute and picc though. Irish fiddlers are fun hear and I enjoy their dancing. I hope you appointment goes well.

 

Keep us informed on your results.

 

Sheryl


Strength and Warmth,

Sheryl

 

Sheryl Doom

ISN Support Specialist

(Retired) ISN Chat Moderator

International Scleroderma Network (ISN)

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