Feel Like I'm Struggling To Breathe Or That I'm Being Choked!

[babettess]

Dear Friends,

Thank you so much for this forum where I can come and ask the questions that no one else will understand. I so appreciate all the replies and the kind words. I know when I'm baffled I can come here and the participants will know almost as much or possibly more than most doctors.

Well I've been to multiple doctors over the course of the last year for multiple reasons. One reason being these weird spells. None of them seem to know why I have these spells where I feel like I'm being choked and can't breathe. They also don't seem too concerned about this although it is the symptom I would most like to get rid of right now. This comes on suddenly and I haven't been able to find a trigger. These spells are really bothering me lately and they have me a little concerned. Other background info-DX with POTS-, possible EDS, possible small fiber neuropathy although QSART normal. I will be seeing a great POTS doc again in June for his recommendations and he said we will talk about this, but I need some guidance now.

When this happens I feel like:

My throat right below my Thyroid is being squeezed and that I am not going to be able to breathe. Feels kind of like something is pressing in on each side of my trachea.

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I can take a deep breath without any trouble but still feel like I'm not going to be able to take one.

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I cough repeated when I'm going through this.

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Throat gets sore from all the coughing.

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I feel like something is in my throat.

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Swallowing difficulty is worse during this time. Even on a good day,I have trouble swallowing or making a swallow start. Much worse with liquids and foods that aren't real solid like mashed potatoe. I feel like I'm going to choke if I don't have the liquid positioned just right when the swallowing action first starts. (I do choke very easlily.) Seems to involve my tongue and the muscles under it. I've seen ENT, neurology for this and they can't seem to figure out why I have this trouble.

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I get hoarse after a spell

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I have to burp alot during a spell

What I've noticed during these spells:

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HR is usually normal or a little high when this is going on

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Multiple muscles in my neck(front and back) and throat and under chin are very tight. I can touch several very sore spots.

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BP normal 110/70

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First spell happened within 36 hours of first dose of Metoprolol

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Benadryl helps. Xanax didn't. ( ER doc tried me on this and it didn't help.)

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Doesn't feel like a panic attack although it sounds like one

Tests/Observations:

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My O2 sats are normal.

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Chest Xray, CT scan of chest, Ultrasound of carotid arteries, are all normal.

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My CO2 runs a little low which would coincide with Hyperventilation Syndrome. (Google is a wonderful tool.)

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C1, C2, C3 are all out of whack; C4-C5 have spurs. My PT says my neck is a mess. Possible EDS, but I don't see genetics til June. Also I have Fibromyalgia.

What I'm wondering:

Does this sound like hyperadneragenic POTS? I haven't been told what kind of POTS I have but the report from CC mentions beta-adneragenic something or other.

Could this be Hyperventilation Syndrome?

Could I have reflux?

Does anyone know what kind of a doctor I should see for this and what tests I should have done?

For those with EDS, does this sound like an EDS problem since my neck/throat muscles are so involved?

For those with MCAD, (especially Mack'sMom), could this be MCAD? Other info on this: 24 hour urine histamine level high-141; IgE normal(actually very low-but within normal limits) and doesn't show any allergies; Endo says no Mastocystosis because 5HIAA or something is normal; I don't really get flushed when this is happening. Benadryl helps but I don't know if this is because maybe it just calms down my system.

Sorry this is so long but I wanted to put as much info on here for everyone to make it easier to answer my questions.

Thanks so much for just being there. Although I haven't done much posting, I try to keep up with reading everyone's posts and have learned so much. Usually I don't have to ask my questions because someone else has already beat me to it.

Hope all are having a great day!

Babette

[futurehope]

Benadryl helps but I don't know if this is because maybe it just calms down my system.

I get something similar if I smell some perfumes or hairspray. My throat feels like it instantaneously closes up and I won't be able to breathe. I believe I have overreactive airways (or something that sounds like that), because they mentioned that during a pulmonary function test. For me, I can quickly overcome the reaction by moving away from the provocation and breathing pollutant-free air. Also, sipping water stops the coughing.

How long does a spell last for you? Have you since gotten off of the beta blocker that has started all this?

I find it interesting that the benedryl helps you, but the tranquilizer doesn't.

As for swallowing, and liquids in particular, I remember another poster on here years back who went to a very specialized doctor at NIH who deals with swallowing difficulties both diagnosing and helping. I also remember him saying that being on tranquilizers long-term affected his swallowing.

In your case, I do not understand if your swallowing difficulty is only during a "spell" or any time?

Have you found anything that can bring an attack to a halt?

One more thing, have you had any back or neck injuries that may have affected the nerves in the area?

I hope you get some answers.

[babettess]

Benadryl helps but I don't know if this is because maybe it just calms down my system.

I get something similar if I smell some perfumes or hairspray. My throat feels like it instantaneously closes up and I won't be able to breathe. I believe I have overreactive airways (or something that sounds like that), because they mentioned that during a pulmonary function test. For me, I can quickly overcome the reaction by moving away from the provocation and breathing pollutant-free air. Also, sipping water stops the coughing.

How long does a spell last for you? Have you since gotten off of the beta blocker that has started all this?

I find it interesting that the benedryl helps you, but the tranquilizer doesn't.

As for swallowing, and liquids in particular, I remember another poster on here years back who went to a very specialized doctor at NIH who deals with swallowing difficulties both diagnosing and helping. I also remember him saying that being on tranquilizers long-term affected his swallowing.

In your case, I do not understand if your swallowing difficulty is only during a "spell" or any time?

Have you found anything that can bring an attack to a halt?

One more thing, have you had any back or neck injuries that may have affected the nerves in the area?

I hope you get some answers.

Thanks Futurehope,

The swallowing problem is always there. It's just worse when I'm having a spell. During a spell it feels like I'm being strangled. My neck muscles are so tight even in the front of my neck. It's not really like I've choked on a piece of food or something. I'm still on the betabocker but am hoping that Dr. K will change it when I see him next month. The only thing that helps so far is Benadryl. I tried Xanax, but it didn't help and made me very anxious all the time. During a "spell" I usually feel this stranglulation feeling for an hour or so. After the main bad feeling of it goes away, my throat still feels tight for hours/days. I have had two car wrecks that have hurt my neck and I am going to PT to help with the residual pain/problems caused by them. My PT is great and has actually treated other people with POTS. He thinks these spells could be caused by the neck tightness, but of course can't do any formal diagnosing.

This choking/strangulation feeling has just really been bothering me lately and I'm a little impatient and am having a hard time waiting to see Dr.K next month. I was hoping someone on here could help a little bit or steer me in the right direction. I got the feeling that Dr. K has an idea of what this is because he said we would talk about it at my next appt. My first appt all we did was go over my history and he didn't have any time to answer questions or make recommendations. The next appt will be for all of those.

Thanks for your reply! It's just so nice to have people on here to talk to. Have a good day.

Babette

[Heiferly]

Babbette,

I'm sorry I don't have any insight into the breathing/choking spells you're having, as the breathing problems I'm currently having seem pretty different in nature to what you're describing. I did, however, want to say that I can relate to your swallowing difficulty. I, too, have problems with swallowing, particularly with thin liquids. It's like they're too fast for my throat to keep up with, and before I can coordinate to swallow properly, it starts going down wrong and I end up choking. It certainly doesn't happen every time I drink, but it's definitely frequent enough to be abnormal and disconcerting. At any rate, I wanted to let you know you're not alone on that one. My doctors locally said that can be autonomic-related, so I mentioned it up in Cleveland and I'm waiting to see if they'll do/say anything about it up there.

I hope you get help with the choking spells soon! I'll be keeping you in my thoughts.

[gertie]

I'm sorry for what you're going through. I can't diagnose you, but I have had times when I felt like I was choking, couldn't breathe, trouble swallowing, & shaking. Mine was usually after I had eaten or had been exposed to perfume, pesticides, paint, or other chemicals. I have lost consciousness after exposures. I kept oxygen for several years to help with symptoms. Dr's didn't know what was wrong with me, so they made me feel like it was my imagination. Who would imagine such a horrible thing? Several years later I was diagnosed with Dysautonomia & realize that was my problem then. I hope you find someone who can help you.

[babettess]

I'm sorry for what you're going through. I can't diagnose you, but I have had times when I felt like I was choking, couldn't breathe, trouble swallowing, & shaking. Mine was usually after I had eaten or had been exposed to perfume, pesticides, paint, or other chemicals. I have lost consciousness after exposures. I kept oxygen for several years to help with symptoms. Dr's didn't know what was wrong with me, so they made me feel like it was my imagination. Who would imagine such a horrible thing? Several years later I was diagnosed with Dysautonomia & realize that was my problem then. I hope you find someone who can help you.

Hi Alicia,

Thanks for your reply. Did the doctor's ever tell you that those times were directly related to your dysautonomia?

Thanks,

Babette

[juliegee]

Babbette-

Definately sounds like it could be an allergic reaction. BUT, with your low IgE that's not likely (mine's low too.) There are folks who have idiopathic allergic reactions/anaphylaxis- bascically for no known reason. If this occurs chronically, you may be dealing with MCAD.

For now, definately take your benadryl. I find OTC zyrtec even more helpful. Benadryl and zyrtec are H-1's. Consider taking another med, an H-2, called ranitidine or zantac. If this combo makes you feel better, esp. taken on a daily basis- you have more than ample evidence that you may have MCAD. I'm also taking into account your elevated histamine levels and symptoms. For now, a regimen of a zyrtec and zantac in the AM and benadryl in the PM seems like a great place to start when you're not in crisis.

Endocrinologists don't DX MCAD. Allergists or masto specialists do. I looked up the H51AA test and it measures serotonin and checks for the possibility of carcinoid syndrome, which can mimic mastocytosis and MCAD. I guess that's been ruled out. The only way to rule out mastocytosis easily is with a blood test to check your level of serum tryptase. I feel certain you've had that done if your urinary histamine levels were checked. That probably was within normal limits (unless you were told elsewise!) ruling out mastocytosis...which still leaves MCAD on the table.

You need an emergency appt. with a good open-minded allergist pronto. Do not hesitate to go to the ER if you need to. That squeezing feeling you describe is probably swelling of your airway. There's a great chance that you can control it with the OTC meds I mentioned. Your local allergist needs to get you on a good daily maintenance regimen of meds, like the one I described above. A daily singulair wouldn't hurt either. I use atarax (rather than benadryl) at night. You also need to carry an epi-pen with you and be instructed on how to use it. AND, if I were you, with all of the evidence you have already collected, I would see a masto specialist ASAP to get this sorted out. I see Dr. Marianna Castells in Boston, not too far from you.

I know how scary this is and my heart breaks for you. Stress or panic will make everything worse. Please le us know how you're doing and feel free to ask any questions!

Hugs-

Julie

[Amber]

Sorry for what you're going through.....I can't offer much other than to say that I get that strangulating feeling when I have codeine (like in tylenol 3's). I have no idea why but it scares me so much I no longer use any pain meds with codeine in them.

[Angelika_23]

Hi, I have this too, and it is due (in my case) to hyperventilation. I don't know what causes me to hyperventilate, but that is what it is for me. It is an awful feeling. I don't get it anymore, now that I am on POTS meds.

Good luck,

Angela

[It'sMyLife]

There is an extreme type of dysphagia that I remember reading about when I was reading about esophageal spasms and GERD. I don't remember what it's called (lotta help huh?) but if you Google dysphagia (difficulty swallowing) you should be able to find out more. I hope that helps a little.

ETA: I did some searching and found what I was talking about. It's called achalasia. I'm not saying this is what you have, only that it made think of this and that you might benefit from reading it.

LINK

[MelissaCrystal]

mdcountrygirl,

The feeling of being choked is a side-effect of the beta-blockers. I had this for a week or two when starting Metoprolol and a week or two while I was coming off of it. My doc said it is normal and that the sensation will pass. It sure is annoying though and scary, isn't it?

[fighting4health]

I started getting asthma-like symptoms (shortness of breath, difficulty speaking, lots of coughing) last year. I was normal on the asthma test at the doctors even though I was coughing the whole time. My doctor put me on a daily steroid inhaler (asmanex) since I had symptoms even though the test came back normal. It has made all the symptoms go away. Don't know if it's the same thing you have, but I understand how it would be the symptom you would most like to get rid of.

[Sophia3]

i get this once in a great while just on its own. Perfumes and cig smoke bother me (like walking into a store with smokers outside) or perfume soap areas (laundry soap and air freshener junk are the worst so I use UNSCENTED stuff but the store aisle of this, bother me)

THAT said years ago I thought I might have asthma but my rare and intermittent problems are getting air IN my lungs, not OUT as in an asthmatic.

My ANS doc thinks it's an upper airway response but it just happens to randomly, might not get a spell for months and then a few times in a week.

after this I can sound wheezy in my breathing or slightly hoarse but both of those things ago away in a few minutes.

I hope you get to the root of your cause since it happens routinely.

[juliegee]

mdcountrygirl,

The feeling of being choked is a side-effect of the beta-blockers. I had this for a week or two when starting Metoprolol and a week or two while I was coming off of it. My doc said it is normal and that the sensation will pass. It sure is annoying though and scary, isn't it?

Hey Babbette-

Melissa may be on to something. Betablockers are contraindicated for those with allergies, asthma or MCAD. My throat tightness, particularly swallowing (and other symptoms!) were affected badly when I was on Atenolol. I was having such awful tachy, I wanted something to control it. Ironically, the atenolol made it all worse. My doc switched me to a calcium channel blocker, verapamil I think. That worked better with my MCAD.

I also see that you already have a prescription for atarx. Take that as prescribed while you are having these awful feelings. It has something in it to help relax you, but it's also a powerful H-1: the equivalent of 2.5 10mg zyrtec.

Hugs-

Julie

[karenw]

Hello Babette,

I haven't been on Dinet site for ages so it was interesting to read your post when I did. I have PAF, and can totally empathise with your symptoms. I have exactly the same thing! About 2 years ago when we were driving to Wales on holiday, I got the feeling that I couldn't breathe, it was horrible. I also think my panicking didn't help. We pulled into a service station and I lay in the back of the car. At this point my husband was ready to take me to hospital. However, I calmed down and was eventually able to breathe more easily, but the fear was still there. To continue, we went on up to Wales, and I wasn't really bothered in the same way again during the holiday.

When we got back home I went to see a top ENT man on Harley Street in London (recommended by my PAF doctor). He examined my nose and throat with a camera on a tube and couldn't find anything other than a slightly 'bent' or deviated septum. He said I should just take a nasal spray which you can buy over the counter here in the UK. I bought it and have used it since, but I'm not sure it really has a great effect. Maybe a slight placebo effect.I do, however, still get the 'can't breathe easily' episodes. It's very difficult to put the feeling into words, but it's not nice at all. When it happens, I reassure myself that having been checked out, there is nothing actually physically wrong. Although, like you, I have all the same tightening and obstructed feelings. I just try and mentally take control and try and breathe calmly and smoothly. After a while, things revert to normal. It may be in the mind, but it just comes from nowhere. I have noticed that it more often occurs when I am relaxed, perhaps it is muscle related?

I noticed that you also mentioned choking episodes. I also have these on a regular basis. It is quite frightening for me and my family. I am very careful when eating, and concentrate on chewing fully and careful swallowing. Despite this, things do still seem to go down the wrong way and result in prolonged choking and gasping for air.

I also have frequent sore throats. I feel as if I have a 'frog in my throat' as we say here, and no amount of coughing seems to clear it. My voice gets very hoarse, and it has pretty much curtailed my part time supply teacher work, as I struggle to talk through the day. As you can imagine, teaching little ones takes a heavy toll on the voice box!

I did see a speech therapist. They tested me to see if I was allergic to anything , but I wasn't. She then gave me some exercises and advice. This involved warming up the voice box by humming etc Also trying to breathe from the stomach rather than the chest to get more air passing over the voice box. She recommended frequent sipping of water throughout the day, and try to avoid coughing ( no hope!) Nothing really worked very well for me, but it might for you

Sorry I can't be of more help. As you can see, I have done the rounds of all the specialists, and am still no nearer an answer. I do find the 'calming down' method works best for me, but it doesn't stop the episodes ocurring, and they are not nice. If you find out any more than me, I would be very pleased to hear from you. Best regards, Karen.

[jjb]

Hi there. I have this problem too.

When you have multiple health issues it is hard to know what is what.

When I was at the NIH for EDS, the doc said she thought I had chiari malformation. Chiari is common in folks with EDS.

Chiari can cause swallowing problems.

Vagus nerve issues can also cause swallowing problems.

I would imagine low tone in the neck and joint hypermobility itself can cause swallowing and uncomfortable sensations as well.

Hope you figure it out soon and get some relief.

[gertie]

I'm sorry for what you're going through. I can't diagnose you, but I have had times when I felt like I was choking, couldn't breathe, trouble swallowing, & shaking. Mine was usually after I had eaten or had been exposed to perfume, pesticides, paint, or other chemicals. I have lost consciousness after exposures. I kept oxygen for several years to help with symptoms. Dr's didn't know what was wrong with me, so they made me feel like it was my imagination. Who would imagine such a horrible thing? Several years later I was diagnosed with Dysautonomia & realize that was my problem then. I hope you find someone who can help you.

Hi Alicia,

Thanks for your reply. Did the doctor's ever tell you that those times were directly related to your dysautonomia?

Thanks,

Babette

Babette, Yes, I was told the reason my body reacts this way is because of my autonomic nervous system hypersensitivity or dysautonomia. The only thing to prevent it is to stay away from the things I know will trigger it. I took Neurontin for a few years which also seemed to calm my ANS. When I get severe reactions now I take a small dose of Ativan which helps the anxiety. Good luck!

[vemee]

I have a similar problem. Sometimes I can not take a deep breath and have to make several attempts before being able to take a complete deep breath. My neck feels like there is a vacuum on the inside. It is sometimes is a struggle to breath. I don't know what causes it but beta blockers have made it worse. My daughter who also has pots has complained of not being able to take deep breaths.

[babettess]

mdcountrygirl,

The feeling of being choked is a side-effect of the beta-blockers. I had this for a week or two when starting Metoprolol and a week or two while I was coming off of it. My doc said it is normal and that the sensation will pass. It sure is annoying though and scary, isn't it?

Hey Babbette-

Melissa may be on to something. Betablockers are contraindicated for those with allergies, asthma or MCAD. My throat tightness, particularly swallowing (and other symptoms!) were affected badly when I was on Atenolol. I was having such awful tachy, I wanted something to control it. Ironically, the atenolol made it all worse. My doc switched me to a calcium channel blocker, verapamil I think. That worked better with my MCAD.

I also see that you already have a prescription for atarx. Take that as prescribed while you are having these awful feelings. It has something in it to help relax you, but it's also a powerful H-1: the equivalent of 2.5 10mg zyrtec.

Hugs-

Julie

Thanks Melissa & Julie,

I really think its quite possibe that the Metoprolol is contributing to this. The very first time it ever happened was only 36 hours after I started taking the metoprolol. I was on Atenolol for 17 years and LOVED it. My previous doctor took me off of it when I first started getting 'bad" and before I was diagnosed with POTS because he thought it was giving me inner ear problems that were causing the dizziness. I am hoping to change back to the Atenolol at my next dr. visit with my new doctor. I have tried both Verapamil and Diltiazem (which are both calcium channel blockers) and they made me feel horrible and I couldn't tolerate either of them. They also didn't calm down my heart rate at all.

I will try my Atarax and see if it helps. I usually only take 6.25 mg which is a very small dose. I didn't realize it was so much stronger than zrytec.

Thanks so much for your help.

Babette

[juliegee]

Interesting that you felt OK on the Atenolol as that is also a beta blocker.... Who knows, try the switch and see if it helps. If it is MCAD, no beta blocker would be indicated.

I take 25mg of atarax in the evening just as a miantenance for MCAD. You're right, your dosage is so small. 10mg of zyrtec would probably be stronger and help more.

Hope you're feeling better soon.

Hugs-

Julie

[ramakentesh]

When I was at the NIH for EDS, the doc said she thought I had chiari malformation. Chiari is common in folks with EDS.

Chiari can cause swallowing problems.

Chiari is an extremely controversial diagnosis - particularly when it is suggested to be the cause of POTS or related symptoms.

[MelissaCrystal]

The feeling definitely passed for me after a couple a weeks and I felt completely normal in my neck area and breathing etc. Only problem I had with beta blockers is that it lowered my BP and I had less endurance. But sooo many people find just the opposite to be true for themselves. If you're having other issues than the strangulation sensation though, there are many other options and different kinds of beta blockers, for sure.

[jjb]

When I was at the NIH for EDS, the doc said she thought I had chiari malformation. Chiari is common in folks with EDS.

Chiari can cause swallowing problems.

Chiari is an extremely controversial diagnosis - particularly when it is suggested to be the cause of POTS or related symptoms.

Yes, it is contraversial and is one reason why I would ONLY go to the chiari institute in NY.

They have worked along side Nazli McDonnel Clare Francomano. The institute understands the chiari EDS relation.

[ramakentesh]

Vagus nerve issues could actually be a causal factor in some POTS patients. I think there is something coming out on this soon.