[sweetsixty]

Just thought that following on from Kizzie’s discussion on psychological reactions to drugs. It might be helpful to me and others to start a discussion about physical reactions
I’ve always had issues with drugs but as I’ve got older there are more and more drugs and also some substances that I’m very intolerant to.

Just to give some examples:
Codeine, just 30mg, half what I was told to take had me rushed to A&E in an ambulance with suppressed breathing and lowered  heart rate. Told to never touch again not even an over the counter  small amount as it’s too dangerous.

TARAVID,  Ofloxacin, Penecillin, (all antibiotics) left me with skin rash.

Tagamet (cimetidine) for GERD not sure what the US equivalent left me with a swollen liver and needing a full body scan to ensure no permanent damage to other organs.

Anti inflammatory drugs give me a gastric reaction.
Statins left me feeling  generally unwell, with dizziness and muscle pain.
Gabapentin led to very fast weight gain, I’m talking 20lbs in 6 weeks! Plus insomnia and feeling nauseous  all the time.
Citalopram (and boy did I need that at the time) left me with a gastric reaction as in severe indigestion, bloating and stomach pain
Tramadol - 50mg dropped my oxygen levels so low I passed out for several hours.
Pregabalin - Cold sweat and fainting.

An anaesthetist warned me he believes I’m an ultra-rapid metaboliser. Which means any drug metabolised through the liver can cause me problems or worse may have no effect at all. He diagnosed that from my reaction to Codeine.  A normal reaction is to metabolise 20% of codeine to Morphine through the liver. But ultra rapid metabolisers (like me) metabolise 70%+ into a morphine, hence my extreme reaction. It can kill! I have a similar reaction to all painkillers.  But the way we metabolise drugs is a genetic issue

But I believe that trauma may have over sensitised my system too.
I also have MS, Epilepsy (as part of MS), osteoarthritis so some of these drugs may have helped. I also have GERD so a very sensitive tummy too.

My osteopath believes that my whole system is ultra sensitive because of the trauma. But especially the sympathetic and parasympathetic nervous systems, hence the ‘brain’ in the tummy is ultra reactive. It’s a nightmare negotiating drugs as I get older.
I even ‘reacted’ to digestive enzymes which are supposed to help your tummy. Plus food sensitivities like lactose etc.

Sorry but it’s a long list.
Does anyone else recognise this journey?  Is this all down to genetics or can there be a trauma link to physical reactions.
I want to say yes as the ACE study points to physical illness so why not physical reactions? I’d be really interested in others experience with this.

[sweetsixty]

Well this study from 2009 seems to support this link too: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2720843/

“The overwhelming majority of allergies were attributed to antibiotics and analgesics. In the resulting analyses, the total number of allergies was positively correlated with the total number of different traumas indicated”

I certainly have both analgesics and antibiotics in my list of allergies.  My ACE score is 7 btw.

And more:
https://www.thoroldtoday.ca/local-news/brock-study-examines-link-between-childhood-trauma-and-allergies-3841496

[dollyvee]

Thanks Sweetsixty. That’s interesting, I had a lot of allergies as a child. Something yo think about.

[sweetsixty]

It would seem from all the non replies, it’s just me  . Back to the drawing board for any reasons why then.
 Best  wishes to all you lovely people x

[Armee]

This posted while there were some access issues for many. By the time I got back in, the site did not show new posts for me in the unread topics list so I am just now seeing this! May be the same for others!

Thank you for posting this article.

I have a rare allergy to the cold...in cold temperatures I get hives and very dizzy and tired. If the exposure is more serious like swimming or very cold temperatures where it snows or drinking something cold it can turn into anaphylactic shock and things like swimming can be deadly. I have ignored how awful it is for a long time but I can finally just own that you know what? This allergy sucks so bad. I cannot do water sports with my kids and I cannot do snow sports with them. I have to watch from the sidelines and be a boring mom and I hate it. Not to mention I have to keep my house heated to 68F or I get hives on my feet, ankles, and hands and arms when I wash my hands. My gas bill was almost $600 US last month and I live someplace pretty warm.

Now I never made a connection between trauma and this allergy but when my therapist found out he tried to say it was from trauma. I rolled my eyes and tried to say others in my family have similar types of allergies. Then he asked me when it started. And I had to admit it started when the trauma started around 15 years old. It also started when I was playing outside one evening while at a sleepover with friends at a time in my life when I would have been terrified to be away from my mom because she'd be home alone which was no good and I felt responsible. So, I have to say that I did become more sold on my therapist's theory that the allergy is related to trauma.

[sweetsixty]

Thank you Armee, and apologies for my out burst, it just felt very strange being ignored completely but your explanation does make more sense than my reaction and it helps a lot to know I’m not alone.

Actually that does sound familiar, I’ve not had the same as you but I do get lots of ‘stuff’ happening which is always put down to my MS and neurological symptoms. However, when I think back lots of my reactions started after I’d left my trauma situation and should have felt safe?

There was no opportunity to be me, until a few years after the abuse was behind me when I was with my partner whose now been around nearly 40 years. He provided a safe haven and my trauma related physical responses started?  It sounds so feasible but is it a step too far?

[paul72]

well sweetsixty,
I never put these things together before... trauma and asthma and allergies
I spent most of my childhood with severe allergies and asthma. TBH I thought it was a symptom of what was done to me physically as opposed to a trauma response.
I was in oxygen tents I remember... as well as allergy shots and shots and shots.
But never even considered the connection.. I appreciate your sharing that article
My allergies and asthma all kind of stopped when I grew up/moved out.

[Armee]

I think it makes a lot of sense that autoimmune would also be linked. They are both immune systems being overactive. Also I'm sorry to hear you have to deal with MS. My uncle had it, before the modern treatments. It would be cruel if that were a result of the traumas you suffered. Just wish the pain stopped when the abuse stopped you know, instead of following us for decades with symptoms.

[Gromit]

Hi,

Just spotted this. I too have reactions to drugs. Luckily I am safe with penicillin but there have been several anti-biopics which caused me to vomit repeatedly, and one caused an all over rash after I stopped the course.

In the ER last year, for a fall, and I was given straight codeine, had to be put on a drip to recover my BP dropped so much, but I am OK if the codeine is combined with paracetamol. I have heard that reactions to codeine are common.

I also had a reaction to the AZ Covid 19 vaccine.

No idea why I am so sensitive to stuff, but, when I was supposed to have surgery last year, they gave me a red wrist band to highlight that I was, instead of a normal white one.

Aside from this I have seasonal allergies but those did not appear until after I left my FOO home, the same time that my menstrual cycle became regular.

I am a firm believer that The Body Keeps The Score, but I do not really understand how.

Unfortunately, with drug reactions, the only way you find out is to have the drug, and the reactions can be unpleasant and debilitating.

G

[sweetsixty]

Thanks to all who’ve now answered this. I guess the links do make sense but they’re common in the population anyway so it’s hard to know. I just wondered if others suffered with this too. Especially as Kizzie had mentioned psychological responses.

Phil 72: I don’t have allergies in the sense you have them but if it is linked that is rotten too. It wouldn’t surprise me if your immune system is impacted too.

Armee: Thank you for what you said but I’m one of the lucky ones as it took them 13 years to diagnose my MS and by then I’d coped so long without drugs and had so many reactions to drugs that I refused the strong chemicals they offered.  I’m still fairly mobile (albeit with the occasional use of wheelchair) at 67. So I call myself lucky.

Gromit: your history with drugs sounds very much like mine, poor you, it’s rubbish as often we need drugs. My reaction to Codeine is extreme but consultant said it could have killed me as my heart rate slowed far too much and my breathing was suppressed too. They took me to A&E on a blue light.

 I was asked by my doctor some time ago if I could ask my T to help me with my ‘drug phobia’ . She wrote back to him to say that I didn’t have a drug phobia but a normal fear based on real physical reactions. She advised that if I needed to take any new drugs I should try them in tiny increments and sit in A&E whilst I took the first bits.

When I had a major op the anaesthetist wrote a letter telling staff how to titrate drugs slowly for me. This got thrown out  (it was a weekend) and they tried to give me normal amounts and found my oxygen levels dropped so much I passed out for hours and they had to put me on extra oxygen.  I refused all drugs after that and did my recovery from knee replacement on just paracetamol and ice!

It’s a difficult journey, so good to know you guys are here but horrid that we all have this.   

[dollyvee]

Hi Sweetsixty,

I'm sorry your doctors did that to you - both writing to your therapist and not listening to you about trying things slowly. I have a long frustration with doctors not listening to me.

I found this article and there is a lot to unpack but it looks like trauma received while young leads to alterations which are harder to reverse over time. It's interesting in that it goes into detail about what's affected in terms of cytokines (inflammation response). I think that inflammation plays a role in how drugs are metabolized as well.

https://gut.bmj.com/content/47/6/861

I had allergies and asthma growing up which I always thought were just genetic but is probably a factor, but could have been activated because of raised stress levels and how the body reacts to stressors with higher inflammation levels present. I have read that cortisol has an impact on the gut microbiome:

https://www.ifm.org/news-insights/gut-stress-changes-gut-function/

I don't have any drug interactions that I know of but do have metabolic/digestive issues. I think that long term stress had led to gut dysbiosis and some of the issues I'm seeing. I also think that viruses can play a role in long term systemic inflammation. Herpes virus has neurological affects as well. I was told by my FMP that autoimmune and viruses usually go hand in hand. 

Hope you're able to find something that works for you.

dolly

[sweetsixty]

Hi Dolly,

Thank you for taking the time for a really thoughtful reply. As you can imagine, with a long drawn out diagnosis for MS I had an awful history of not being listened to also.  I can see how inflammation could play a part in much of what I struggle with medically today.

I also have some digestive issues and one of the first non-diagnosis I was sent home with was IBS.  That was after a gastroscopy when the consultant said to my H “Take her home, there’s nothing there, she’s just neurotic”.  Aaaaarrrgghhh .

Now after nearly 30 years of taking a PPI daily my guts are well messed up so maybe that also is an issue with the drugs. I’ve also seen the cortisol link with digestion too.

Thank you for the articles, I’m going to chase them up especially the one on the gut issues.  The worst of my trauma lasted from birth (or before) until 27 when I finally got away, but going on 55 when I finally went NC as the light dawned on me about it. That’s quite some time to be traumatised so that truly makes sense.

I didn’t realise the link between Herpes and neurological problems. But the MS professor I follow is convinced of an EBV link with MS. So it would make sense if viruses also play a part in all this.

Thanks again for your time, you’ve given me some real food for thought.
Sweetsixty x

[dollyvee]

Hi Sweetsixty,

I'm happy to talk to other people about this, so glad you find some of it relevant. I had to spend a lot of time researching and there's a lot of people who have significant conditions that are not listened to by doctors because it doesn't fall within a narrow scope of what they think could be wrong. They talk about how mind influences body, vice versa, and stress but I don't think that it's really explored when diagnosing. I'm sorry you had to go through that again, it sucks. I feel terrible to dismiss people/doctors but I've been through this so long that I know when there is something wrong and what I've tried etc.

IBS is pretty significant and now they are seeing that a lot of patients with IBS have SIBO as well, which when left to it's own devices, can have all sorts of implications on hormones, blood sugar (as I'm finding out with the pancreas), mood, food intolerances (which can then develop into autioimmune conditions etc). PPIs IMO (unmedical opinion) would make any gut bacteria worse as it inhibits the stomach from producing acid which then allows them to flourish and not kill bacteria as the stomach was intended to do. My guess is that they were given because you had GERD or some acidity which was actually the symptom of bad bacteria. I would look up the link between PPIs and gut bacteria.

It is a long time for the body to be stressed but hopefully there are some things you can do to turn it around. I see the body as a circle and there's all these factors that contribute to health. Stress is a big factor and if there are underlying conditions such as EBV or other viruses, it gives them the environment to come out. When you factor in gut dysbiosis, it's another inflammation or stress, that allows them to flourish further. A friend has a rare autoimmune disorder that it very difficult to deal with. She noticed that it came about right around the time she was diagnosed with herpes and now she is starting to experience nerve pain. Over time the herpes virus embeds itself into the myelin sheaths in the nerve causing pain and damage. I can imagine a link to EBV as well with MS. One fmp I saw said he'd never seen a case of autoimmune thyroid disorder without an underlying viral connection. This past week at work someone told me about having a near death experience on a job where a piece of heavy equipment fell where they had been standing and working about 10 minutes before. Shortly after, they experienced an outbreak of shingles (which is the same chicken pox/EBV we have as children that stays dormant in the body).

https://jamanetwork.com/journals/jamaneurology/fullarticle/795486#:~:text=Radiculopathy%20caused%20by%20HSV%2D2,leg%20weakness%20may%20be%20observed.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6723519/

I know it might not be accessible to everyone but I would recommend seeing a functional medicine practitioner as they actually test and diagnose to try to get to the root of the problem. I saw naturopaths etc, and perhaps I had not so great ones, but the fmps were the ones to help starting to get to the root of the problem. Testing isn't cheap but in the long run it was worth it for me.

Keep us updated and hope that you're able to get some answers.

dolly x

[sweetsixty]

Hi dolly,

Yes, I’ve been painfully aware for a number of years of the all the links you mention.  I’ve done a lot of research in this area too as you can imagine. Research is my thing as I’ve already got a PhD albeit not in the medical field!

The link between PPIs and gut dysbiosis is a familiar one and yes I have GERD and Hiatus Hernia.  I’m sure that SIBO also plays a part in all of this but seeking help is very difficult. We don’t have that many really good functional medicine docs in the UK and most are concentrated in city regions whereas I live miles away from cities. I’ve spoken to quite a few of them but the cost of all has been just too prohibitive and although you say it’s worthwhile that only works if you can afford it.

But you’ve given me some push to think about following this road again and to see if I can find anything. The last time I spoke to a functional medicine doc they took a look at my diet, supplements and habits and told me I was already doing everything I could for myself and they didn’t think they could add anything to warrant me paying out lots of money!

Titration from PPIs after all this time has been discouraged by everyone I’ve spoken too. Mainstream medics of course think it’s a really bad idea. I tried to do it myself too often to count  and caused significant damage to my oesophagus. Crazy thing is I’m convinced the PPIs have caused my gut problems.  Although I only take a minimum amount.

I’m sorry you’ve suffered too with this, it all sucks. Thanks for the good wishes and yes I’ll keep you posted.

Sweetsixty x

[dollyvee]

Hi Sweetsixty,

I've found a really good FMP and can DM you her name if you want. She is based in London and Herefordshire but does video consultations. The cost however is still an issue. I put it off for a long time. The GI map she did was really helpful though.

SIBO is a tricky one. I've spent a lot of time on the SIBO reddit forum and it's not medical advice, but people share the things they've tried etc. and what might/might not work if you can get around all the "what does this symptom mean." It's definitely not a one size fits all solution. It's also relatively new in terms of diagnosis. It didn't even come up when I started this journey; at the time it was all "Candida."

https://www.drkarafitzgerald.com/2019/04/23/causes-for-refractory-sibo-dr-steven-sandberg-lewis/

The other thing I thought of when you said you were a fast metabolizer was methylation and MTHFR genetic markers. I've read that methylation markers are actually responses to trauma and how trauma is expressed genetically. Maybe if this occurred since you were a baby, it might make sense. I thought because of my reactions to wine that I might have had a methylation issue so I did a 23andme. There were some methylation markers but only had 30% reduced methylation I believe. I haven't done too much research into methylation and digestion but looks like there is a link which is interesting.

https://www.beyondmthfr.com/mthfr-digestion-healing-hiatal-hernia/
https://www.beyondmthfr.com/mthfr-and-the-acid-reflux-paradox-part-i/
https://www.frontiersin.org/articles/10.3389/fpsyt.2019.00808/full

In the last link it mentions "The FKBP5 gene (which) encodes a heat shock protein 90 (HSP90) cochaperone that modifies the sensitivity of steroid receptor hormones" leading to glucocorticoid resistance.

In here it explains that "the lack of FKBP51 does not appear to have deleterious side effects in mice and its presence causes steroid hormone receptor hypersensitivity." I wonder if this is inducing the effect and anxiety that people are experiencing when taking hormones or perhaps it's referring to another steroid hormone.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4236834/

Hope this isn't intrusive. I've developed a side interest in these things and like looking them up, so please disregard if not relevant.

Good searching!
dolly x