Would you have Dyspnoea (Breathing difficulty) when you have Ehlers-danlos syndrome?
Summary: Dyspnoea is reported only by a few people with Ehlers-danlos syndrome.
We study people who have Dyspnoea (Breathing difficulty) and Ehlers-danlos syndrome from FDA and social media. Find out below who they are, other conditions they have and drugs they take.
You are not alone: join a mobile support group for people who have Ehlers-danlos syndrome and Dyspnoea >>>
Ehlers-danlos syndrome (group of inherited disorders that affect collagen structure and function) (latest reports from 113 Ehlers-danlos Syndrome patients)
Dyspnoea (difficult or laboured respiration) has been reported by people with high blood pressure, asthma, rheumatoid arthritis, pain, chronic obstructive pulmonary disease. (latest reports from 211,244 Dyspnoea patients)
On Jan, 13, 2015: 1 people who has ehlers-danlos syndrome and Dyspnoea is studied.
Gender of people who have ehlers-danlos syndrome and experienced Dyspnoea * :
Age of people who have ehlers-danlos syndrome and experienced Dyspnoea * :
Severity of the symptom * :
Top co-existing conditions for these people * :
- Migraine (1 people, 100.00%)
Most common drugs used by these people * :
- Maxalt-mlt (1 people, 100.00%)
- Savella (1 people, 100.00%)
* Approximation only. Some reports may have incomplete information.
How to use the study: print a copy of the study and bring it to your health teams to ensure drug risks and benefits are fully discussed and understood.
Do you have Ehlers-danlos Syndrome and Dyspnoea?
You are not alone! Join a mobile support group:
- support group for people who have Dyspnoea and Ehlers-danlos syndrome
- support group for people who have Ehlers-danlos syndrome
- support group for people who have Dyspnoea
Could your drug cause:
Other conditions that could cause:
Can you answer these questions (Ask a question):
- Kindly tell me whether this treatment is accurate for spine tb?
have spinal tb and having treatment since 5 months..also a kidney dialysis patient..having two dialysis per week...i think this treatment is not effective because i am having severe back pain, severe pain in feet..nausea..and shortness of breath...
- Number of dysponea reports for potassium chloride. jantoven medication
Having serious bouts of shortness of breath, fatigue, disorientation with minimal exertion---doctor is not convinced symptoms are real.
- Is there a published study that shows propranolol can cause shortness of breath and chest tightness?
I am a pharmacy student in his final year on rotation at the VA Memorial Hospital. While working up a patient I noticed she has called many times complaining of "panic attacks" stating that she can't breath and has chest tightness. Over the previous two week I also noticed she has been to the ER for these same symptoms.
Patient is a 61 year old female, with history of hypertension, dyslipidemia, migraine without aura, and while I don't see a specific diagnosis the patient current has a script for albuterol and at one time had a script for ipratropium. Patient has been a lifelone smoker who quit this past June.
This patient was diagnosed with migraine headaches in 1986 and has been on propranolol 80mg ever since - 28 years. Interestingly, 1986 was around the time Inderal lost its patent and propranolol became generic.
The patient served in the army from 1972-1976 during the vietnam war. She has a history of mental health issues (not sure what) and anxiety. I feel she has been "labeled" and current episodes of "panic attacks" are answered with benzodiazapines and she is sent on her way.
During my first look into propranolol, the very first page said, "Check with your doctor immediately if you have any of the following side effects:
1)Coughing up Mucus
2)Shortness of Breath
3)Tightness in the Chest"
This caught my attention. I then started probing deeper and found an article written by Dr. Noreen Kassem titled "The Long Term Side Effects of Propranolol." In the article she wrote, "...propranolol and other beta blockers can also worsen breathing disorders, such as emphysema and asthma, because they constrict the air passageways of the lungs and can cause fluid build-up in the lungs. This can result in shortness of breath, difficulty breathing and chest tightness in patients who are on propranolol for long periods of time, or who have respiratory disorders."
I tried to find Dr. Kassem to no avail. I wanted to know exactly where she got this information. I would like to find some primary literature on this topic but haven't had any luck. I need proof, because as of right now I'm a student being told that "she has been on this agent for 28 years, I doubt it's bothering her now." I'm not buying it and I think something is here.
-61 year olf lifelone smoker with almost guaranteed declining lung function
-28 year (chronic) use of propranlol (a non-selective beta blocker)
-Experiencing "shortness of breath" and "Chest tightness" that she and everyone else is called anxiety and/or panic attacks.
I think the propranolol, while not the cause of these problems, is certainly exacerbating them. Does anyone have proof of this happening; peer reviewed articles, anything. My rotation is done in 2 weeks and I know no one will ever look into this again after I'm gone.
ps... forgive any typos
- Is it ok to take fioricet and albuterol together?
I have been having bad headaches the pain is behind my eyes front for head and temples (I have also had a warming sensation in the back of head and thought body here and there that no one can explain to me ) but I have been subscribed fioricet but I'm a chronic asthmatic so I take albuterol inhaler and some times solution for my neb I read that these 2 can have interation and I been feeling shortness of breath which I know can be a side effect from fioricet but I do take my inhaler daily and I want to check if anyone has been in same situation and if there were any interactions
- I have been taking iophen cnr liquid for about 6 years now almost every day and now i'm wondering if it has any long term side effects cause im taking it for breathing problems doesnt seem to working
Ok so I've been taking this medicine for 5 to 6 years now almost every day several times a day for a terrible cough I have and breathing issue but under some further investigation I've found that this medication may be making my breathing issues worse when I was told that it would make them better. It's been several years and I just want to be able to breathe normally and Easily again but this "medicine" doesn't seem to be doing the job
More questions for: Ehlers-danlos syndrome, Dyspnoea
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- 3 strong drugs together against neuropathic pain
Neuropathic pain debuted when I was 24, now I'm 50. Received diagnosed with Ehler-Danlos syndrome (EDS), joint hypermobility type, when I was 35 years old. So it can take some time to get a diagnose. And as EDS-patient I do not belong to any clinic. Orthopedics says that EDS is not orthopedic, rheumatology says that EDS is not an autoimmune disease, GPs say that EDS is too difficult, and so on. Sooner or later we all end up at Psychiatry, even if we are not depressed.
The first kind of pain I got when I was 24 came from low back, but I experienced as pelvic pain and leg pain. It was clearly a neuropathic pain, but it took years to find out. Later it was treated by a pain clinic with cortisone around the genitofemoral nerves (both sides). Since this treatment didn't result in lasting freedom from pain, the pain clinic started to give me RF (radio frequency) treatment. This made the pain disappeared after one year, and I was 80% free from it between 2002 and 2014, 12 years. The pain doctors said pain could return after 10 years.
The other kind of neuropathic pain started 2003 with intense stomach pain. During 6 months I could hardly eat nothing due to nausea and vomiting. After this 6 months, stomach pain changed to almost unbearable pain in upper back.
What happened 2003, and what all the doctors missed, was that the right lowest ribs slid up over the sternum. This rib dislocation is till there today, but now with a lot of cartilage formed around the rib where it is stuck in the lower end of the sternum. The dislocation is clearly visible on X-ray. This has greatly affected the thoracic spine. I have a scoliosis which I had not before 2003. And I still have severe pain in the thoracic spine.
It was initially treated with morphine daily, and later with Durogesic (fentanyl), but this didn't help much. 2005 I was hospitalized because I had too much pain to take care of myself and my hygiene. After some months the doctors started to give me clonazepam because the muscles along the spine was in a chronic seizures. Clonazepam helped, but I could still have a lot of pain in two vertebrae in the thoracic spine. It felt as if someone drilled into the vertebrae without anesthesia. After a few months, doctors also prescribed me methadone. Then the pain disappeared almost completely. Since 2006, I have eaten clonazepam and methadone every day, and I need to sleep in an armchair to not get more pain because of moving during sleep.
There are side effects. After 1,5 years with clonazepam and methadone I started to have panic attacks. Or rather one long panic attack which didn't stop before I got treatment with amitryptilin and pregabalin (Lyrica). These 2 medicines stopped the panic disorder completely after some hours, and the panic was then gone. Then I got side effects of these 2 medicines, amitryptilin & Lyrica, too. I gained a lot of weight (from 83 to 148 kg) and got much water (edema) in both my legs under the knees and in both feet. The feet could swallow to the double size. 2012 I stopped with amitryptilin and started to loose weight again (in Aug 2014 below 80 kg) and get less water in my legs. Today I eat as little medicines I can, but I have to take methadone, clonazepam and Lyrica every day, twice. If I try to take away one of these 3 medicines, I got pain problems at once. Lyrica is the most painful one to take away. In Sept-Dec 2013 I lowered Lyrica from 300 mg daily, to 150, then to 75 and finally 0 mg. The pain I had was extremely difficult to handle. It didn't help to take more methadone or anything else. I have checked on Internet and found that many people got pain from quitting with Lyrica. Most people start eating it again. So did I. But 2006 and 2007 it was enough to treat the pain with methadone and clonazepam, I got the Lyrica against anxiety not pain. But today I take Lyrica against pain.
Beside weight gain and leg edema, clonazepam and Lyrica significantly affect the sexual desire. And Lyrica alone makes it almost impossible to ejaculate. All four drugs together (clonazepam, methadone, amitryptiline and Lyrica), make one forget all about sex life. You don't even miss it. When I stopped with amitryptiline and lowered Lyrica (still taking clonazepam and methadone), I could suddenly easily get erections again, feel desire, but not getting orgasms. This is quite difficult to deal with.
The pain pattern is greatly affected, by pain and by the medicines. So is the mood. I get something which feels like heavy depression, especially if I take the medicines late that day. I should take a medicine like methadone 3 times a day, because the effects of the tablet lasts around 8 hours. But I take them every 12 hours, to have a low consumption in case doctors prescribe them too late (which happens, and then it's good to have a spouse going to the pharmacy buying them for you, because you have too much pain to go yourself).
Since methadone is also used for treating heroine addicts, medical staff treat you with disrespect when they see that it says "methadone" in your health record. I need to show a certificate that says that I deal with chronic neuropathic pain, that I never have had problems with drug addiction, to get normal respect.
I wanted to share this because I think I am alone in the world with these medicines in combination against neuropathic pain caused by hypermobile joints, joint dislocation and muscle spasms. After trying almost everything else, including surgery cutting nerves, methadone, clonazepam and Lyrica seems to be the only way to kill my pain. But it's a life where you always is questioned, because of the use of methadone. I can guarantee that everybody in the world should accept these medicines if they had experienced the unbearable pain I had in upper back before they started to give me clonazepam and methadone.
- Faslodex driven hell
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What has kicked in from Faslodex...are some horrific side effects......About a month ago...I started having a strange little cough...dry...most of the time.....At times the cough becomes uncontrollable for aprox 15 / 20 minutes...then calms. NOTHING works at relieving it...although I suck down water like it is my last drink on earth...and use a wonderful...soothing throat drop, Halls Breezers...Cool Berry...which eases me...even if it is only psychologically, it is magical. The cough has gotten considerably worse over time...and for those that don't know me...I am sure they think I smoke ten packs a day. My voice is also affected at times due to the cough. My breathing is horrific...and I can no longer walk for any length of time...or for more than a short distance.....Nor can I walk and talk without coughing...and or losing my breath. Stamina...this I have none of!!! And this past week...the shit hit the fan.....Joining the cough...are bone and joint pains...as well as muscle pain. When I called my doctor...@ Sloan Kettering...I spoke with the nurse...and she had not a damn clue as to what might help. As a matter of fact...she told me that she has never heard of any of the side effects that I am now having. WHAT'S WRONG WITH THIS PICTURE???? EVERYTHING!!! However...when I check reputable sites...I find not a few...but hundreds of other people with the same side effects.
From what I have read on all the sites...the only way "WE" are going to get help with issues like these...is by sharing with one another. Not one of the individuals that I speak of has had any positive help with their side effects from their doctors. Am I pissed off??? You bet I am. As for depression...that only comes in small doses for me.....like yesterday...when my body hurt me so badly...my cough was out of control...I had difficulty breathing...and I could not stand on my own two feet without holding on. That moment in time has passed...but for how long??? What will I be hit with next??? When???
- My reaction to talking sumatriptan for the first time.
after 10 minutes of taking the sumatriptan tablet i got all of the symptoms i stated and from those i developed a rare movement disorder called 'Dystonia' that has affected my right foot making me unable to walk and my right hand making me unable to write.
- Pulmonery hypertension
gives you heart failure, enlarged right side of heart, lungs are not getting enough oxgen, have blood clots, so effects all body organs
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