anyone else have trouble finding medications that work? like almost nothing works on me for nearly anything. pain medication doesn't work, medication for my mental issues doesn't work, and even heart medication doesn't work.
Ehlers-Danlos Syndrome (EDS)
Edema & Anasarca
This is an interesting topic, I have found both supporting positions and the contrary in different areas of material related to EDS.
I've heard from Dr Saperstein himself that folks with EDS tend to experience the side effects of medication, specifically mental health medication, almost immediately... even so much as during the first dose, and have fast and disproportionate reactions to any inactives which the general population seems easily able to handle. This may be linked to a mast cell disorder connection with EDS, also exemplary in the high level of allergies and anaphylactic reactions in folks with varying degrees of EDS severity.
Sensitive zebras, we are.
I've also read that for folks with EDS, many things may not work the way in our bodies the way they do in others, and we may have extremely high tolerances to some things, or unusually fast metabolic processes which break down the usual dosages at a compounded rate.
One particular example of this seems to be the almost unanimous finding of the broken MTHFR gene in EDS patients who have taken the GeneSight™ test, according to responses in community forums and the main EDS Discord server. This gene is directly responsible for conversion of folic acid to folate, and helps to explains fetal neurodevelopmental problems and worse post-partum symptoms in EDS sufferers.
I got my test back this week and found that I, too, was marked in the red "significantly reduced folic acid conversion" column.
From the test results of T/T: "This individual is homozygous for the T allele of the C677T polymorphism in the MTHFR gene. This genotype is associated with significantly reduced folic acid metabolism, significantly decreased serum folate levels, and significantly increased homocysteine levels."
This also implies a direct correlation with the increased prevalence of depression and mood disorders in people who have this genotype, as well as a correlation with other genetic factors that can affect the transport and uptake of medications which are used to treat these disorders.
E.g.: my results also showed a variation in UGT2B15(*2/*2) under PHARMACOKINETIC GENES
“This genotype is most consistent with the intermediate
metabolizer phenotype. This patient may have reduced enzyme
activity as compared to individuals with the normal phenotype.”
Within Gene-Drug interactions, this showed that a “variation was found in patient genotype that may impact medication metabolism" for the following:
ANXIOLYTICS AND HYPNOTICS
Serum level may be too high, lower doses may be required.
★→ From experience I can tell you VALIUM GETS ME WRECKED and I have been roofied on it 3x and it was absolute black-out memory loss with additional unintended self-injury and a recovery period of days to get back to "normal," even as a high-functioning alcoholic who was used to binge drinking at the time.
Moderate Gene-Drug Interaction:
methylphenidate (Ritalin®, Concerta®) 4
No Proven Genetic Markers:
amphetamine salts (Adderall®
lisdexamfetamine (Vyvanse®) 10
clonidine (Kapvay®) 10
4: Genotype may impact drug mechanism of action and result in moderately reduced efficacy.
10: While this medication does not have clinically proven genetic markers that allow it to be categorized,
it may be an effective choice based on other clinical factors.
Vyvanse quite literally saved my life. I cant even function without it anymore, because I refuse to give up having my "old self" back.
Under PHARMACODYNAMIC GENES
C/C - Moderately Reduced Response
This patient is homozygous for the C allele of the -1291G>C
polymorphism in the adrenergic alpha-2A receptor gene. This
genotype suggests a moderately reduced response to certain
S/S - Reduced Response
This patient is homozygous for the short promoter polymorphism
of the serotonin transporter gene. The short promoter allele is
reported to decrease expression of the serotonin transporter
compared to the homozygous long promoter allele. The patient
may have a moderately decreased likelihood of response to
selective serotonin reuptake inhibitors due to the presence of the
short form of the gene.
I would personally extrapolate this result to also imply that I may have decreased likelihood of response to serotonin uptake in general.
Not Present - Lower Risk
This patient does not carry the HLA-B*1502 allele or a closely
related *15 allele. Absence of HLA-B*1502 and the closely
related *15 alleles suggests lower risk of serious dermatologic
reactions including toxic epidermal necrolysis (TEN) and
Stevens-Johnson syndrome (SJS) when taking certain mood
A/A - Lower Risk
This patient is homozygous for the A allele of the rs1061235 A>T
polymorphism indicating absence of the HLA-A*3101 allele. This
genotype suggests a lower risk of serious hypersensitivity
reactions, including Stevens-Johnson syndrome (SJS), toxic
epidermal necrolysis (TEN), maculopapular eruptions, and Drug Reaction with Eosinophilia and Systemic Symptoms when
taking certain mood stabilizers.
I have the same issue with pain meds and heart meds, it took a LOT of experimenting before finding something that works well enough to keep me alive while also not having side effects I can't deal with. It's gotten to a point where I tell doctors and dentists that yes, what they're doing is going to hurt me, because everything does. Everyone in my family is super resistant to most over the counter medications and even the prescription stuff needs to be strong because we all metabolize everything so quickly. I'm sure there are some genetic causes, but it's frustrating to deal with when I have a broken arm or I just had major abdominal surgery and I can't get pain meds for it because my local hospital has me on the drug seeker list
Outside the Valium, I seem to "go hard" with most substances. I build *extremely* high tolerances very quickly, and I take dosages far beyond that usually suggested for a person my size (basically SE Asian-sized) just to feel even moderate effects.
Why do they have you on the drug-seeker list if you have an EDS diagnosis? Just from clinicians ignorant to the correlation marking you as such when you report needing more?
I'll never understand why I'm labelled drug seeking when I have several years' worth of documented proof that I am in massive pain and build tolerances very quickly. Everyone is so worried about addiction (which isn't the same as dependency) that chronic pain patients are left to suffer. I'm not addicted to painkillers, I'm just in that much pain. It's absolutely insane
Literally in-sane 😮💨 so sorry you're going through that. Are you in a red state?
@wise i understand completely... I am not on a "list" because early on I realized medications doesn't exactly work, so when they ask if I need something for pain my response is "yeah, if you had something but since you don't then there is no need". Also there is a few that wrecks me like Valium or most hardcore sleeping medications, although my tolerance does build very quickly to where in about 2 months no amount of the medication does anything for me.
I agree, I have a hard time finding meds that work and if they do work I build up a tolerance in a week and back to square one. I know we have problems with local anesthesia so I’m sure we have difficulty absorbing or using drugs properly.
SAMHAIN, I AM in a red state lol could you tell by the asinine approach to the opioid crisis that THEY CREATED
@Pfeiffer yeah, I actually not that long ago had to have a wisdom pulled without any local anesthesia; it was a pain, to say the least. Also , I woke up during my appendix being removed when I was 12 and woke up during heart surgery when I was 27. It takes only a week or two for me to build a high tolerance except for strong sleeping medications; they take a bit longer, about a month or two like ambien and seroquel.
☝ This content is generated by our users and it is not a substitute for professional medical advice. Please consult with your physician before making any medical decision
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