Dangers of steroid nasal sprays

2 years ago, over the course of a few days, I started to feel unwell. Started with just feeling "off", nothing specific. It progressed to feeling light headed, dizzy, extremely fatigued, my eyes balls felt swollen, the muscles around my eyes hurt. I developed difficulty chewing my food for a day or two, difficulty swallowing which was transient. I started having anxiety attacks, was always feeling nervous, I was off work for a month but suffefed these symptoms off and on for 6 months before I started feeling back to normal. These symptoms came and went, I had good days and not so good ones. I saw 4 doctors, a neurologist, two opthamologists and had my vision checked 4 times because my eyesight kept changing. I was given an MRI to look for cerebral vascular changes or MS. They ruled out Lupus, Sjogrens and several others. They suggested it was BPPV but the physiotherapist said she didn't believe that was my issue as I didn't have any of the classic symptoms. In the end, doctors said it was a mystery virus or stress.
I had similar symptoms last spring and summer, but not nearly as severe but they certainly impacted my life as I had to cancel my summer holidays with my kids because I was too tired and unwell to go anywhere. Again, I felt better I the fall.

I got sick again this past March. Same symptoms as 2 years ago. Because I was used to the symptoms, the anxiety wasn't as bad but I still had to take my Ativan to stop my mind from racing at night and to try to calm my racing heart. I have had very good days mixed with bad. Again, doctor thought it was stress, as I'm facing major surgery next week. Because the dizziness and mild vertigo were back, Doctor thinks it's BPPV so again, I went to an excellent vestibular physiotherapist who again said I do not have the classic signs of crystals floating, but after the 1 hour assessment, did conclude that my vestibular system is damaged and I have been doing home exercises to overcome that. Doctor said that perhaps my stress over surgery has reactivated my virus. Nothing could be done. 8 days ago, I developed a very sore throat only on my left side. It hurt to swallow. I got a prescription for antibiotics on Monday. Once again, doctor noted fluid in my left ear, which has been persistent this spring.

I took my script to the pharmacy and while I was there, I asked for a refill for my nasal steroid spray. The woman who was standing behind me in line overheard me and when she was done her turn, she came and sat beside me in the waiting area and proceeded to tell me her story about her experience with the same spray I had just asked to be refilled. She started using it I 2010. I was shocked to hear that she had suffered the similar ordeal and symptoms. It took her and her doctors 2 years to figure out that the cause of her health issues was the nasal spray. She used it faithfully, 2 x a day during allergy season, spring to fall. She told me what she had learned about it and suggested I reasearch it for myself, the take the information I find to my doctor. I did. I wish I could find her and thank her for her profound help in restoring my health.I'm not sure about the legalities if I mention my specific nasal spray so I won't name it. I'm in Canada. It's a fairly common spray prescribed for post nasal drip and allergic rhinitis.

It was prescribed to me 2 years ago for post nasal drip, 1 week before I started feeling unwell. I remember going back to the pharmacy and asking them if I could be having some sort of adverse reaction and they said absolutely not. Looking back....I can say that my symptoms start and end when I start and stop using the spray. I never, made the connection because.......I'm a twit! My symptoms increase in intensity when I use it more but I just thought it was allergiex or ????? I believe that the persistent infections in my ears and throat are caused by this bloody spray. Not a single doctor that I have seen, not one, even thought I have told them about springtime allergies, has made the connection to the spray. I printed off a lot of the information on the health issues people using this spray have reported and took it to my doctor. She was floored, she had no idea.

I have been off it for 6 days and am feeling absolutely better than I have in 3 months. Each and every one of my symptoms have cleared.
If you or someone you know is using a steroid nasal spray and is experiencing health issues or strange symptoms, I urge you to google it and see your doctor. Depending o your use, stopping steroids suddenly isn't a good idea, so you have to do this through your doctor. I wasn't a daily user of it so for me it wasn't an issue. Here is a list of sympyoms that I and other users have attributed to the steroid nasal spray:
-light headedness and dizziness
-fog brain
-bouts of diarrhea followed by a day or two of very frequent urination
-causes glaucoma and cataracts
-anxiety and in some, violent or aggressive behavior
-painfully dry mouth and sinuses
-recurrent ear, sinus and throat infections
-vertigo
-agitation
-insomnia
-bouts of extreme fatigue
-arrhythmias or palpitations
As with any drug, you have to weighh the risks with the benefits. I my case, I feel that I have "lost" every spring and part of the summer because of this drug. I'm not sure who I'm more angry with, the pharmaceutical companies for failing to adequately disclose more of the adverse effects, or for my MD who prescribed it blindly.

I hope this post can help someone who is in the same nightmare that I was. I would also be interested to hear from anyone else who has had a similar experience with steroid nasal sprays.
Namaste

great post meemaw,

I have pollen allergy in summer and allergy to animal hair, normally it is all okay, I take antihistamine but I was prescribed at least twice in a few years, Beconase and something else similar and only used them a few times to realise they were making it worse.

The GP insisted I used them daily but I have long since realised that GP's here have often misdiagnosed things or just given out standard things without really knowing the true diagnosis so I often have to tell them which products will work and I don't listen to them much anymore.

This is a GREAT post. While I have not personally experienced this problem., You can tell it was made by someone who generally cares for their fellow humans.

SnF.

Thank you for making this thread! It's amazing that so many doctors could not make the connection.

I went through a similar experience when doctors started me on hormone replacement therapy; very severe MS-like symptoms for over two years, and nearly three thousand dollars in co-pays.
My symptoms seemed to vanish on their own overnight; my prescription had expired, and I was lax about getting in to the doc for a refill. Four months later, I had my refill, and on day three of taking the pill I thought I was back in hell! But, at least I had an answer.

Some people are ultra drug sensitive, and it appears you are one of us!

Very good thread. Doctors don't question possible effects of medicines as much as they should. I am glad that that woman told you about this. I have researched some of the drugs and inhalers and often they just treat symptoms and not cure the problem. This way you have to keep renewing the prescriptions. Also, we assume that the disease will be worse if we don't take the meds, when in fact, the doctor could possibly have chosen the wrong treatment for the condition in the first place. Look how much was spent by you and your insurance to treat this reaction to this medicine, the cost was very high I bet. Even the doctors in Canada can not comprehend these side effects as real I see, and maybe ignorance pays well for the medical trade there also even though there involved in social medicine.

Think about this a bit. What are the odds that that lady would be getting here medicine at the same time as you, one who experienced bad side effects. Add to that the odds that she would pay attention to what you ordered and that she would actually tell you of the side effects she had and tell you to research it. I would put the odds of that at one in a hundred. Something caused things to line up right.

Look for natural cures for this and remember, just because it is natural, doesn't mean it is safer. It may be using the same chemistry. Examine cross reactivity of Chitinases, maybe you shouldn't be eating apples when the birch trees are emitting pollens. This cross reaction stuff is starting to be studied better. Remember, if you have apple pie, the chemistry is neutralized, so the reaction does not occur. There are many different cross reactivity issues. Apples aren't in season when the birch tree is pollinating, remember, we evolved with our foods.

a reply to: nugget1

This may not be directly related, but it is related in a general way of side effects doing harm.

When on chemo a few years ago, the clinic would give us a benadryl tablet to make us drowsy (more relaxed or manageable you could say). I found that it gave me the "restless leg" syndrome. I reported that to the nurses. They were surprised at my report. Frankly, I don't think they believed me.

Recently, I took an allergy pill (that I never take in any form) and soon noticed that I had acquired the restless leg syndrome again. On reading the ingredients, I discovered why. I've never had that condition develop without benadryl being involved.

(While not allergic to many meds, I am allergic to penicillin and even small amounts of zinc in in typical vitamin pills greatly diminish my sense of taste.)

In researching my wife's many health issues, amongst others a condition called 'leaky brain' I.e problems with the blood brain barrier permeability. One specific way this presented itself was a life threatening reaction to MSG, triggering excitotoxicity. Many of the symptoms are on your list above. There is plenty of resources on the net about it.

My suspicion fell on her nose spray because of the benzalconium chloride used as a preservative. There seems to be very little research on the long term safety of spraying it up your nose daily. The way it kills bacteria is by compromising their cell membranes.

Now I could be completely wrong, but within 2 months of stopping with the nose spray and avoiding anything containing benzalconium chloride, that specific set of symptoms improved dramatically to the point where almost a year afterwards it is safe to get take always again. A year ago it would have been safer for her to play Russian roulette!

Some things to try when you experience brain fog and friends are citric acid & bicarb. Here in .za you can use Eno's (I think in the USA a similar thing is called Alka Steltzer or something like that). Another thing that helped her a lot is Glutamine. The biochemistry behind these 2 are very different. I'll explain if anyone is interested.

a reply to: asciikewl
I too have developed some type of "allergy" to MSG! I used to love Chineese food but I get so physically ill now after eating it, I've had to stop. Each time I ate it, my reaction would be more severe than the last. Thanks for your reply!

Thanks to all for your kind words, support and for sharing your experiences. Thanks also to "Asciikewl" I may even be able to eat Chineese food again!
It is my hope to help anyone who may be dealing with a similar issue to regain their health and quality of life. I was blessed to cross paths with a stranger who went out of her way to help me and I want to pay it forward by trying to help one of my ATS kin if I can.....

meemaw, thanks for posting this. It has the potential to help a lot of people.

I've had experiences with corticosteroids, one good and many, many more bad,and they're definitely nothing to mess with. They were always presented as a last-resort or temporarily taken kind of thing. In one particular case, ridding my body of the many side effects took years.

And the worst part of it is, you never really know. As someone else said it could be a preservative or inert other ingredient also causing the problems, either by itself or in combination with other things.

But I'm very happy that you figured it out and are feeling better now.

a reply to: ~Lucidity

glad the poster started this thread....good to get info out like this.....I would like to add: be pro active

1. always look up prescriptions med side effects, will be listed from the most common to the rare...you may be the unlucky one that has the rare reaction.

2. if you have any new symptoms, one of the first questions should be have you recently started any new prescription
meds. then look them up

3 I would ask the pharmacist before I would ask the doc, they deal directly with meds all the time and get feedback from the people that use them......

Hello just wanted to share what I have experienced with this steroid nasal spray that I was prescribed after I had nasal surgery. I had a polyp in my right nostril that I swear was the size of my pinky finger I couldn't breath through the right side at all and when I tried to blow my nose I noticed this thing in my nose that wasn't congestion. Anyway I went to an Ear Nose and Throat specialist and he lined me up with surgery and afterward prescribed this fluticasone furoate nasal spray (he told me it was a steroid). I used it diligently after my surgery, cause I was freaked out by this polyp thing. Anyway I was always feeling like I was going to vomit every night when I went to bed, it sucked. So I made the connection between this nasal spray and said symptoms.

It really stinks that MDs like to prescribe medication for long term treatment, any drug should only be a short term use. I worked in the pharmaceutical business and it seems any drug taken over long periods of time will f'k you up worse than your original problem. I would think Doctors would know this! If they do, they don't care, they over prescribe the # out of medications. Any prescription insert I believe states that this is only for short term symptom relief ( I could be wrong) but it should say that. I do not and will not take any prescribed medications and I no longer work for the pharmaceutical company. My Mom who is now in a nursing care facility was prescribed valium, flouricet, some hormone, she had been on all these drugs for as long as I could remember. It was when my Grandma and sister died that she really went into overdrive taking these medications, she was so hooked that my Dad would take her to the ER if she ran out of pills, she was crazy without them or call her Doctor on weekends. She has had a rough life, they deemed her bipolar or chemically imbalanced. Anyway to make a long story short, she now has Alzheimer's and has had it for about 10+ yrs now and I blame it on the pharmaceuticals and the stupid Doctors who prescribed them to her for over 20yrs! Her body is physically healthy but her brain is shutting down, she hasn't walked or talked legibly for about 8yrs. I wonder how many Alzheimer patients were prescription addicts? Thank you for letting me share my story. I am so glad that you realized that this was causing your problems. Doctors do not treat the cause they only treat the symptoms so no one ever gets cured! This is a win win for the medical and pharma professions, but debilitating and deadly for us.

a reply to: meemaw

Thanks - the last few years have been a bit of hell for me with sinus/rhinitis and asthma - and worsened by medications. Researched the link between advair and nasonex - found out the worst "side effects" are worse when they're used together. Now use nasonex very sporadically, with benadryl at night. Works for me.

F&S&

Learn't from working in the scuba diving industry is that the only thing you spray up your nose is a sterilized saline solution, anything else and your asking for trouble. There is quite a large cavity in the sinuses that evolved some pretty nifty tricks if you help it rather than hurt it. Just getting over bronchitis myself which after studying kills more people than breast cancer! The local chemist is struggling to keep up with meds. Cha ching, the moneys rolling in.
The medical business is sadly another reminder of why humans need to quickly evolve to our next level....

I have a chronic condition called Eosinophilic Esophagitis, difficulty swallowing, inflamed and bleeding sinuses/throat. After many different antibiotics and sprays with no change or worsening I've just been doing research lately. Here is what I've been looking at recently:

originally posted by: PraiseTheHighestOne
I was recently hit with a cold/flu like illness that lasted a little over a month. Had a high temperature off and on for a few days with very thick mucus. I still have some mucus and fatigue but the worst of it has passed now.

www.cam.ac.uk...

Look into Colloidal Silver(CS). You can spray it on most surfaces without damaging it and it is anti-fungal, anti-viral, anti-bacterial, anti-mycoplasmal, etc. You can safely drink some daily as well.

I make my own CS and use it in my Ultrasonic Humidifier to sterilize rooms and sometimes sleep with it running.

I would also recommend a probiotic supplement, look for something that has 25 Billion+ organisms.

Here's a website I found that has way too much information: www.distance-healer.com...

Use 'ctrl+f' and search what you are curious about.

Hope this helps!

What you could do right now is mix 1/4 tsp baking soda and 1/4 teaspoon sea salt(or regular) with warm water and gargle with that a few times a day. Silver and salt doesn't go well together so stop this gargle once you start using silver.

a reply to: PraiseTheHighestOne
Interesting but I'm now inclined to agree with subtopia in that nothing is making it up my nose except for salt water. Since I've stopped using the steroid spray, I don't seem to have a return of ky post nasal drip or allergy symptoms...

originally posted by: Aliensun
a reply to: nugget1

This may not be directly related, but it is related in a general way of side effects doing harm.

When on chemo a few years ago, the clinic would give us a benadryl tablet to make us drowsy (more relaxed or manageable you could say). I found that it gave me the "restless leg" syndrome. I reported that to the nurses. They were surprised at my report. Frankly, I don't think they believed me.

Recently, I took an allergy pill (that I never take in any form) and soon noticed that I had acquired the restless leg syndrome again. On reading the ingredients, I discovered why. I've never had that condition develop without benadryl being involved.

(While not allergic to many meds, I am allergic to penicillin and even small amounts of zinc in in typical vitamin pills greatly diminish my sense of taste.)

WOW! I too get restless leg syndrome from Benadryl, and am allergic to penicillin. I have lots of allergies and get itchiness and generalized rashes, and had been taking other allergy meds for a while, when my doctor decided to try a prescription strength form of Benadryl for a chronic itching rash on my lower legs. I had forgotten all about it, but as soon as I took the new prescription, my legs started twitching and it took hours to wear off. Ugh!! I tried it again, just to make sure it wasn't a coincidence, and for sure, that med gives me awful restless legs. I threw the entire bottle away as I can't stand the feeling. I would rather deal with the itch, as bad as that sometimes gets.

Now, you have me wondering if there is a connection between allergy to penicillin and the restless leg reaction to Benadryl. May be coincidence? Maybe not? Interesting, at any rate,and worth taking note for anyone else sensitive to these kinds of physical reactions.

a reply to: meemaw

I 100% agree with the original post and I suffered exactly from the same Delima and consulted 8 different doctors and all of them not only ignored when I asked them that could it be the nasal spray.
The pharmaceutical companies spent billions of dollar on these products and I suspect they deliberately hide these side effects. Steroid nasal sprays cause panick attacks as well as racing heart. I would wake up at night gasping for air. Upon my own investigation and experiments I was able to figure out what 8 well paid "Morons" could not find out that it's the damn nasal spray that almost gave me heart attacks .

I am taking my time here to help others out who are experiencing the same and are helpless because the doctors in Canada suck big time .

cheers !!!