Need To Discuss This Serious Medication Fear

[lissy]

Hey all,

I have a serious problem I am afraid of taking meds and I tend to read everything about the medication online and find stories of other people having bad reactions. I have had this fear for years and I have been lucky enough not to have many health problems that require medication. But I do now, I have a UTI and B.V together and I know the UTI can become serious if left untreated but I can't bring myself to overcome this FEAR . Everytime I have taken meds antibiotics or anything I have full body tremors tachycardia while laying down shortness of breath and I had had a hot red patch on my face???

I took Vitamin D one pill 50,000 units it made my tongue numb and also my foot. I always have these crazy effects and when I tell the pharmacists or the Doc they say thats not normal and keep taking it it will go away. They blow me off.

But I never complete any meds after the 1st dose or 2 because these symptoms scare the death out of me. Every single time I take meds I have those symptoms Is this pretty common with dysautonomia or POTS and if so what can I do???? I have called the doc and urgent care for the past week trying to get them to prescribe THE SAFEST MEDS and they think I'm crazy...I have thought I was just having anxiety attacks but I lay down relax and about 45 minutes after taking anything my body just does its own thing like it fights to get the chemicals out. Anyone PLEASE HELP I don't know what to do. I have 2 infections and I know I've had one for over a year could it cause my POTS symptoms to be worse than normally would be if so...this could be why I feel so awful.

Lissy -----miserable

[Rene S.]

Lissy, I can relate 100% to your situation. I'm in the same boat. I term what I have as pharmacobia, the fear of taking meds. It is now nearly midnight and I sit here staring at the dose of Remeron that I'm supposed to take. I've jeopardized my life and still am by not taking a med for my labile hypertension due to my abolute terror over drugs. Seems like everything I have ever taken since being diagnosed has given me side effects.

I'm depressed and anxious and my psych. has me trying Remeron because the SSRIs made me so crazy and jittery. And now I read on the forum that Remeron is bad for POTS! I'm three weeks into it and I have chest pains and I fear the worst. I break it into little pieces and a take a few at a time.

I'm sorry I wish I could be more encouraging to you but I'm going through this same thing. At 50, I should be ashamed of myself, but I also live alone and I fear having a horrid reaction and no one finding me.

I'm sorry I'm not able to make you feel better.

Please feel free to email me anytime and maybe we can conquer this together. No one understands. My daughters are like, just take the darn pill and deal with the side effects. They don't get it.

Hang in there and I'm here if you want to chat.

ruekat@comcast.net.

Rene

[lifesaver]

I would suggest you both find a psychologist/therapist to see to help you overcome this phobia. There is nothing shameful about it. It is an illness. And this phobia is endangering your health.

A bladder infection can become a kidney infection and make you extremely sick and put you in the hospital.

There is treatment that can help you overcome and manage your phobia---it is an illness, not a character flaw.

[Guest tearose]

I am assuming you have had bad experiences in the past and that is why you are fearful.

I think caution is justified. I too have many reactions to drugs and have to be careful. I don't have fear because I've written down what antibiotics are problems and I know what drugs caused trouble, for example BB's gave me chest pain, too much salt makes my lymphedema limbs swell...

Can you turn your fear into a more positive word and action like extreme care?

I think it is a normal for us to have to think about every little drug side effect because we are so sensitive to them. The key is to respond in a calm, careful way. We only have this one body and we are the one's responsible for them. No doctor or pharmacist will take responsibility for what we put into our body. We must.

All that said, unless it is for religious/ philosophical reasons IF you have an infection, you need to know what antibiotics you can take safely. Work with your doc or an allergist to know what works and what doesn't. If your primary doctor doesn't see/know these bad reactions you have, they can't help you find something that will work.

I am in support of approach where we think, research, understand and then make a choice about taking drugs.

[potsgirl]

I have to second 'lifesaver'. Most of us are sensitive to drugs, and there's a good reason why. However, we need to be able to intelligently make decisions about what our major problems are and find the best and safest drug to help eradicate that problem. Especially when there are infections and heart problems involved. Anxiety and OCD can make us hurt ourselves, sometimes, by letting us stand in our own way. I know...I've been treated for these illnesses and still take meds to keep them under control.

A good therapist can go a long way in helping us manage our fears and anxieties. GOOD being the operative word. Take care of yourselves, and don't be afraid to get appropriate treatment. There are a lot of us here and out there who care so much about you!

Best,

Jana

[Rene S.]

Tearose, you are correct. I nearly died twice - both from anaphlactic shock caused by compazine at the age of 12 and then again from CT contrast dye at the age of 22. I've always been sensitive to meds, but much more so since the dysautonomia.

I'm now working with both a Cognitive Behavorial therapist as well as my psych. I've gone 3 weeks on a med now and I'm not enjoying the side effects and it takes all I can muster to put it in my mouth. I wish I could say that the drug is working, but so far I'm not seeing improvement.

I have no fears taking an antibiotic if it means getting rid of an infection. I know we are all fearful and there's so much on the web that scares us, but then again, when we pick up our scripts at the pharmacy, the inserts on the warnings can be 2 pages long.

Sometimes I long for the good old days when I was ignorant, and just took the meds as prescribed and we didn't have the internet to do so much research.

Lissy, we both can get through this!

Thanks, Jana, you are my hero and I marvel at what you can do!

Hugs to all,

Rene

[Guest tearose]

lissy, do you have anxiety or ocd? That is something different.

If your tongue is swelling and your face red after the second dose of an antibiotic, you MUST tell the prescribing doctor and preferably go see them to confirm what the heck is happening!!!

Don't think the infection was treated with those two doses. You are still brewing and fighting infection. This alone will wear you down.

You must trust that your PCP can help you find the medications you need and that are safe for you! IF you have anxiety or can't do this you need to find a PCP you can speak with. It sounds like you try to report your reactions and are either not taken seriously or just drop the ball. I am strongly encouraging to call your doctor and keep pushing...get to a resolution!!!

We all want you to get better! POTS is enough to deal with.

tearose

[MommytoSJEA]

I can relate. But, you really do need to treat the infections. I am really sensitive to meds too. I hate taking a new med, I get so many side effects. BUt I also know that I need to take them to feel better even though in reality the side effects make me feel worse. Its a cost/benefit ratio. If your doc thinks you need to take these meds....then you should. I agree with what others have said, get in and see a psych. It will help so much in the long run to have someone to talk to to help you overcome this. They will be unbiased and listen to your fears and help you through them. Hugs to you

~Kelli

[EarthMother]

There's been a slew of research that indicates that during periods of great stress the blood brain barrier is more permeable. Makes me wonder if some of our common drug "sensitivities" aren't related to the fact we metabolize drugs differently than "normal" people.

But for whatever reason, I am VERY sensitive to drugs (as well as foods, herbal meds, environmental toxins etc.) My Doctor recognizes this and we try to stay within a circle of meds that my body has demonstrated it can tolerate and at a dose (usually pediatric) that doesn't cause a problem. For instance, I can handle penicillian at pediatric doses ... so sometimes we'll try something like amoxicillian at 250m 3x a day even if there is another "preferred" antibiotic for a particular infection. If the penicillian doesn't work after a few days we'd move on to a new drug. I also do well with zithromax -- again at lower doses than adult prescribed.

I am always up front with my Doctor and let him know if I need to stop a drug that has been recommended and for what reason. We add notes in my chart so we can avoid those in the future if possible. I do recall years back he prescribed something for what we thought was BV ... he did a culture and told me to start the prescription that day. Well I had a horrid reaction and by day 2 needed to call him and say it was a no-go with the new med. Turned out the culture came back and it wasn't BV. Live and learn.

Sometimes we have to take new meds. I have on occasion asked my husband to read up on side effects on my behalf so that I would not become overly concerned, and he could more objectively assess if any reactions were attributed to the new drug or a byproduct of the illness/infection they were treating. I also as the Doctor if I can break the pill and try half or a quarter dose for the first day to help gauge my body's response to the new chemical.

Some of the peeps on boards have had formal drug metabolization testing which affirms they are not genetically structured to process certain lines of pharmaceuticals. I wish I could recall off hand who had done these but brain fog this morning is drawing a blank.

Be gentle with yourself. Trust your inner wisdom -- which is not always the same as your google-armed-mind. Breathe slow and deep and assure yourself that the answers will come. You WILL know what to do and you will be able to do it.

Deep bow to your courage.

Good luck on your healing journey.

[futurehope]

Lissy,

Have they cultured your urine and found bacteria growing in it? I'm asking because I have a medical condition called interstitial cystitis, and the symptoms mimic an infection, but I do not have a positive urine culture.

Has a urine culture & sensitivity test been done? In it, the antibiotics that the bugs are sensitive to is mentioned.

For future reference, have a running list of medicines and the effects they've had on you. Write the date, the dosing schedule, what you took it for, and the prescribing physician. You'll have this handy for future reference.

Hopefully, you do not even have a bacterial infection in your bladder. Maybe, the BV makes it feel that way.

Let us know what you decide.

[Tachy Phlegming]

It's not clear from what you wrote whether the tachycardia and tremors were from fear or from the medications. Assuming they (and the other symptoms) are from the medications, this would be my strategy.

Like Earth Mother said, I'd ask if I could take a small dose at first. I might also want to take the normal dose in the right number of hours but take small increments more frequently.

My experiences with medications are weird too. I don't respond normally to them. I read about them too (without fear) and make judgments accordingly.

But usually the descriptions have no relation to either my positive response or negative response. I always have to do research after the fact as to why they worked when I didn't have the problem (antibiotics helped with probable cystitis and not an infection -- and other people have found the same), and why I've had such a bizarre reaction with breathing (that drug turned out it be okay in small doses over intervals) or low blood pressure when it's not listed in the side effect profile for the drug.

It often makes communication with a doctor about medications a senseless experience -- there is no rhyme or reason to how medicines work for you unless you do a very thorough investigation of the pharmacology of the drug and evaluate it in terms of some of the physical defects you have (and even then, it's not always clear).

[Nikki]

I used to feel the same way, to some extent. I always worry if I will have side effects. The thing is though, if you have something wrong to begin with, chances are things will stay the same or only get worse if you don't try medication for it. My dad always told me that if I do have to take something (he knows I get worried) to not read the side effects, don't look tons of stuff up online about the bad things that happened to people that were on it. If you take something and feel weird, or something strange happens, then read the side effects or do research. Because if you read all the bad things that can happen, you will probably think one of them is happening to you even if it's not. Plus everyone is different. What is horrible for someone else might really help you out. So you never really know what effect it will have until you, yourself, try it. I know it's probably hard though. Easier said than done I suppose..but I wish you luck.

[lissy]

Thank You all so much for not thinking this is just something I can snap out of ...Thats how everyone really talks to me just get over it and take your meds.

I have had a these weird feelings everytime I take anything and it worries me because I never know if I am just showing sensitivity or having a reaction. I was DX way before POTS with GAD but all my symptoms back then are basically the same as they are now with POTS with the sensitivity to Meds, lighting, loud noises,crowds, environmental chemicals,. I have a hard time trusting Doctors and believing they care about the safest way of treatment I think the long process of going to so many Doctors to get them to believe I had this POTS made me distrust them even more and I had to request testing throughout the whole process of elimination, which made me lose faith in the medical system. When I was my sickest with this POTS and cardimyopathy????? no doctor knew I was as sick as I was and they tried saying I had depression or it was all in my head.Up until I demanded a ECHO and they said EF was 45% but it resolved and I was left with the POTS which 19/20 doctors didn't believe I was even sick. And they don't believe that Medication give me these reactions either. ****Get a doctor I'm more comfortable with that takes me serious thats on my check list!

Its a great suggestion for for to see a specialist for this issue.

Its a great suggestion to have husband read the leaflet instead of myself.

And making a list of Meds with reactions is also a good idea I never remember....

OK. the culture for UTI and B.V were positive some of the UTI symptoms have improved on their own which I know infection is still there I don't really think a UTI can totally clear up on its own ( I wish it could:))

The meds they said would work are : Cipro, Bactrim, (macrobid for the UTI Macro bid is something I can not take have had serious reaction to).Those are the meds they tested against the bacteria that I have.

For the B.V which I have had for a long time they said to take:Flagyl

I have been told I can take half the dose for half the time with both meds.

Now I guess I have to just work up this courage and have benidryal on hand in case I shall overcome this fear because I know my body needs help getting rid of these infections. And maybe this is just Gods way to make me get over this fear of meds because I'm going to Cleveland in 2 weeks and from the tests they will know what kind of meds I will try to get my POTS more under control and who know maybe I'll be one of the lucky ones that meds will give me my life back. That will be a interesting testimonial

Thank You all so much for your support and I will take these Meds today ( Taking almost 250 cipro and 250 flagyl)

Lissy

You all have a Merry Xmas and Happy New Year and Let this be the Year we Overcome that obstacle that affects our life that we can take control over.

[flop]

Lissy,

(hugs) I hope you are doing okay with the antibiotics. I know that I am "sensitive" to some meds so I usually start on half the adult dose to test out any new med for POTS.

Both Ciprofloxacin and Flagyl (Metronidazole) are commonly used antibiotics and don't usually cause allergic reactions. In general antibiotics can upset your stomach so having some "live" yoghurt / probiotic drink during and after the course of antibiotics can help keep up the numbers of good bacteria in your digestive system.

An allergic reaction is usually quite obvious with one or more of rash, swelling, wheezing - any of those should be quite obvious to a doctor and you should go to the ER or urgent care.

Let us know how you get on,

Flop

[flop]

Also meant to say that working with a therapist is a good idea. This is the sort of issue that could also be helped by an NLP practitioner (neuro-linguistic programming).

Flop

[gertie]

I am going thru the same thing. My fear of med's is because I have had so many life threatening reactions to them. Antibiotics being my worst. I have had everything from analyplatic (sp?) shock, seizures, break out in whelps etc. I start with 1/4 of an adult dose to see how I react to a new med & if I don't have a bad reaction I up the next dose.